Colonoscopy yesterday- bad news

[LindaS]

I had a colonoscopy yesterday because I've been flaring for about 10 months. I've been on Humira since October and I haven't had much improvement. I've had Crohn's for 24 years, always only in the terminal illium and surrounding area, but now it is also all over my decending colon, rectum and anus. Why is it spreading now? It looks like I'm going to have to try methotrexate, which I'm scared of.

Has anyone else had their disease spread after all this time? Also, if you've tried methotrexate, what was your experience with it? I'm so frustrated.

 

[lookame]

I had mydisease spread over the coarse of a year. I had a colonoscopy but the doctor decided to not treat me and it went untreated for a year. It spread to my entire colon instead of located in the ilium. After a year I got so bad someone looked at me again and I started treatment. After treatment I stopped flaring and I'm now in medicall induced remission but I can tell there is still inflammation by how thin the stool is.

 

[tiloah]

I did a half marathon with a woman who said for many years (probably about 20) her Crohn's was pretty reasonable and easily managed. Now that she is getting older it is starting to give her more trouble. So yes, I think people have had their disease spread after going a long time with it staying under control or in one place. I hope I go 24 years without my disease getting worse!

Methotrexate can be scary, but your doc has weighed the benefits and risks. Crohn's IMHO is a LOT scarier. I hope the medicine does the trick and you have many more years of controlled disease. Welcome to the forum.

 

[Misty-Eyed]

Well I guess the longer you've had it, the greater the chances of it spreading! Mine has always been pretty wide spread through out my colon. It just started stricturing all of a sudden a few years back.

Methotrexate worked great for me. Just remember to take the folic acid and keep an eye on your blood levels. My liver ended up a little damaged so I came off it. It quickly went back to normal though. I didn't drink alcohol for year just in case though!

 

[Jennifer]

I've had it for 20 years and so far its stayed in the same area but I wouldn't be surprised if it spread. That's one if not the main reason why I have regular colonoscopies and endoscopies done even though I'm in remission. Its important to catch it early which is also why I don't ignore any symptoms and I let my GI know about it right away. 10 months seems like a long time with no improvement. I'm surprised the GI didn't try something else during that time.

 

[LindaS]

Well, I was in the hospital for a bit, and he upped the dose of Humira to weekly instead of every other week and I did a course of predisone. I just had a colonoscopy in Feb, 2010 and there was nothing anywhere but the terminal illium. I've had 2 resections and am now very gun shy about treatments after all my disasters with past treatments. I am either allergic to or have extreme side effects from every medication we've tried, or it doesn't work for me. I hope the methotrexate helps me, but knowing my history and the side effects to this medication, I'm not overly optimistic about anything anymore.

 

[tiloah]

Well, I was in the hospital for a bit, and he upped the dose of Humira to weekly instead of every other week and I did a course of predisone. I just had a colonoscopy in Feb, 2010 and there was nothing anywhere but the terminal illium. I've had 2 resections and am now very gun shy about treatments after all my disasters with past treatments. I am either allergic to or have extreme side effects from every medication we've tried, or it doesn't work for me. I hope the methotrexate helps me, but knowing my history and the side effects to this medication, I'm not overly optimistic about anything anymore.

I can imagine you would feel discouraged and frustrated. Before my surgery I often felt like they were just throwing drugs at me that weren't going to work trying to stave off surgery as long as possible. I was just past the point of no return I think.

That said, methotrexate is a good drug and it has worked for people. Perhaps it's just the one you need. I hope it does the trick.

Just to clarify, if you have only ever had inflammation in your TI, and you have had two resections, how was your TI still in place in Feb, 2010? Or do you mean the inflammation showed up where your TI was removed?

 

[LindaS]

Just to clarify, if you have only ever had inflammation in your TI, and you have had two resections, how was your TI still in place in Feb, 2010? Or do you mean the inflammation showed up where your TI was removed?

The inflammation was around the anastomosis site. My TI was removed in 1995, then I had another resection at the anastomosis site in 2006. Since 2006 I'd been in remission until last fall. I had a check up colonoscopy in Feb. 2010 and it showed no real issues, just a little bit of inflammation where I always have had problems. But I was having no symptoms at that time. Now, barely a year and a half later, there is disease in lots of spots where it never existed before.

Sorry if I wasn't clear.

 

[tiloah]

The inflammation was around the anastomosis site. My TI was removed in 1995, then I had another resection at the anastomosis site in 2006. Since 2006 I'd been in remission until last fall. I had a check up colonoscopy in Feb. 2010 and it showed no real issues, just a little bit of inflammation where I always have had problems. But I was having no symptoms at that time. Now, barely a year and a half later, there is disease in lots of spots where it never existed before.

Sorry if I wasn't clear.

No problem! That's what I thought you meant.

 

[xoxava]

Wow 10 months is an awfully long time to be miserable. I hope things start to improve for you soon. So far my crohns has stayed in my colon and rectum area and im hoping remicade will keep it calm and prevent it from spreading.

 

[sunflower]

Sorry to hear about your bad news Linda. I know how you feel. Mine is still just in my colon, but it is worse than it ever has been. I have had lesions from one end of my colon to the other, but have never had narrowing and the beginnings of a stricture. I was diagnosed almost 20 years ago. Had it longer than that, of course. This is the worst it has been for me. Hang in there!!