This definitely sounds like you have Crohns instead of UC. Has a gastro mentioned that to you ever??? Your symptoms sounds like Crohns?

So I've had my j-pouch going on 20 years and this has only started to happen semi-recently. My GI had me do a blood test to check for UC or crohns and it came back as both? He wants me to continue taking the entyvio treatment. I've been doing pretty good recently on that.

@Danr11 posted:

So I've had my j-pouch going on 20 years and this has only started to happen semi-recently. My GI had me do a blood test to check for UC or crohns and it came back as both? He wants me to continue taking the entyvio treatment. I've been doing pretty good recently on that.

WOW! I never heard of that test result before!!! LOL! I would just say you have Crohns, sorry about it changing, that happens sometimes unfortunately. I am glad your treatment is working Keep me updated

It sounds like your IBD serology came back as indeterminate. This is not particularly uncommon. It just means that your antibody results have characteristics of both Crohn’s and UC. It would appear that the more they study IBD, they discover that there is so much more to learn.

The perianal abscesses would likely be from IBD activity, not drug complications. They are more associated with Crohn’s than UC, but are seen in both. In a practical sense, it does not matter unless you are overly concerned about your definitive diagnosis. The main take away is that staying on Entivio is appropriate UNLESS it is time to move to a different biologic because you are not getting enough from the Entivio. It might be worth exploring with your doctor if there is a better choice that is known for better controlling perianal disease. Combination therapy may also be in order. Five years is a long time to be putting up with this!

In regard to diet, the only thing I have heard of that helps some people with gut inflammation is avoiding most processed carbs and sugars.

Jan

@Jan Dollar posted:

It sounds like your IBD serology came back as indeterminate. This is not particularly uncommon. It just means that your antibody results have characteristics of both Crohn’s and UC. It would appear that the more they study IBD, they discover that there is so much more to learn.

The perianal abscesses would likely be from IBD activity, not drug complications. They are more associated with Crohn’s than UC, but are seen in both. In a practical sense, it does not matter unless you are overly concerned about your definitive diagnosis. The main take away is that staying on Entivio is appropriate UNLESS it is time to move to a different biologic because you are not getting enough from the Entivio. It might be worth exploring with your doctor if there is a better choice that is known for better controlling perianal disease. Combination therapy may also be in order. Five years is a long time to be putting up with this!

In regard to diet, the only thing I have heard of that helps some people with gut inflammation is avoiding most processed carbs and sugars.

Jan

PERFECT!!!!

Thanks, both of you. This has been very informative! Luckily I have had an MRI done recently, and currently I am abscess free. My doctor is monitoring it closely and is happy with continuing the Entyvio treatment.

@Danr11 posted:

Thanks, both of you. This has been very informative! Luckily I have had an MRI done recently, and currently I am abscess free. My doctor is monitoring it closely and is happy with continuing the Entyvio treatment.

You are welcome! Glad you are doing great

Ischiorectal abscess and/or Fistula. It’s been over 7 years since J-pouch creation.  Recently, one trip to ER, followed by two consecutive out patient surgeries within two week time frame in efforts to locate and drain a badly infected abscess or fistula; Seton installed to allow complete drainage.  This is my first experience with this, I’ve had enough pain in my rear for a lifetime just in this last month.  Hoping this will be a single event as I am on the mend now, however, will have a final surgery to place a flap over the fistula opening at some point within the future. Anyone dealt with this?