My Crohn's is on the move

[Flatblackdog]

Hey all. For a while I had the mildest Crohn's my doc had seen, but in the past couple of weeks it packed itself up and moved into my Colon. Lower left ab pain, bloating, mucus and blood in stool. It's all new territory to me and seeing blood in the toilet is quite unsettling. Thanks to your posts I realize I'm not alone. You all have provided a wealth of information and guidance just by chatting here on the forum. I'm just scared is all. Diagnosed at 52 and to have it move into my colon at 55 I can't help but think about cancer. Anyway, I'm at work trying to go about my day as if nothing is wrong. Thanks for being there.

Toby

 

[DJW]

Hi Toby,

Sorry to hear you're having issues.
Do you have an appointment booked with your GI specialist?

Chances are you're in a flare (still nothing to get excited about) and need a change in meds to get it under control.

Sending you my support.

 

[Flatblackdog]

DJ:

I just saw him last week and was put on Xifaxan. Currently on Entocort and may suggest we look at Uceris if this keeps up. I'm not sure the Entocort is making its way to the far end of my colon. Just sent him an email and have a follow up in January.

It's all just a little overwhelming and here in the U.S. very expensive. Entocourt is $1,486 per 90 Xifaxan $670 for 30. Fortunately I have this app on my phone called GoodRX (Free) that drops E to $686 and X to $230. Can't wait until I've satisfied this $5,000 insurance deductible. The stress is not helping. But I woke up this morning, stood up, and found my way through the morning routine and got to the office. Normal is hard right now but it could be worse. Looking for the positives in this sh&@ storm ;-)

 

[Cat-a-Tonic]

Hi Flatblackdog, I'm sorry to hear that your illness has progressed like this. I can relate - I got sick 5 years ago but just started seeing blood in the toilet last year, so I understand how scary and disconcerting it can be to have that come on suddenly like that. Did your GI do a colonoscopy or any other tests to have a look at exactly what's going on in your colon? Also, have they checked your bloodwork lately to make sure that the bleeding isn't causing anemia?

Entocort is fairly mild, and as you alluded to, it works mainly on the terminal ileum and right colon. It might not be strong enough or be getting to the spot you need it to be in. Have you asked your doc about other options? Prednisone is a similar med, although stronger and is systemic (meaning it works on the inflammation regardless of where it is in the body), so there's a higher risk of side effects, but the upside is that it's also much cheaper and might work better for you. Just a thought for you. Good luck, I hope you and your doctor can get things under control soon.

 

[Flatblackdog]

Cat:

Thanks for the note. My last colonoscopy was two years ago (Dual Balloon) just prior to that I swallowed the camera pill. Doc wants to eliminate the easy things first so Xifaxan to see if it's bacterial overgrowth. If that doesn't fix it on to the next thing.

Here is to a better New Year!

Toby

 

[Cat-a-Tonic]

I can understand that. They had put me on Cipro when I first started bleeding, as they suspected it might be salmonella (it wasn't). When the Cipro failed to do much of anything, then I had a colonoscopy. So yes, it is good to eliminate some suspects, but definitely do push for a colonoscopy if the Xifaxan doesn't help and/or if you continue to experience bleeding. Good luck and happy new year to you too!