Pouchoscopy

Alright - some good-ish news. 

I had my pouchoscopy today - to look in my internal J-Pouch, check on the Crohn's, and try to figure out where all of that damn blood is coming from. 

The pouch looked great - which is really nice! So good that they didn't even bother with biopsies this time (since I just had biopsies taken in July anyways). 

They also couldn't see any sign or reason for all of the blood I'm experiencing. 

The problem is that the pain and the blood might be coming from an area too far into my intestines to reach. 

Now, because my hemoglobin levels seem to be okay and they can top up my iron levels as needed, there isn't much more that they can safely do. There are procedures that can be done, but they are very high risk for people with an internal J-Pouch. If that were to fail, it would mean a permanent ileostomy. 

Also, because I've been able to add more foods to my diet (instead of just potatoes day in and day out), it is much easier to avoid any large bleeds. 

The general consensus/suspicion is that I have some 'spider webbing' or spider angiomas sitting inside my intestines. They are basically blood vessels that have come to the surface - so whenever I eat any foods that are abrasive or really difficult to digest (like fruits/veggies/nuts/red meats, etc...), or if I just eat too much all at once, that food scrapes past these blood vessels and opens them up to bleed into my intestines. 

This is the running theory only. 

There are no massive ulcers or large masses or anything that can be seen on ultrasound or other imaging tests, and obviously whatever is bleeding is in a spot that cannot be reached by upper or lower scope. 

So my new normal is just a lot more blood, but it doesn't *appear* to cause any major damage, so I guess I can sort of safely ignore it? It might be quite startling to see, but apparently not necessarily dangerous. 

I also have the tools and foods available to avoid the really severe bloody episodes (the ones that last weeks on end) by sticking to softer foods. 

So I keep going as is and follow up in a year, unless things worsen significantly. 

While I would love a real answer - something to point at saying "this is the thing that is causing you to bleed from your intestines", they have done every safe test that they can to try and pinpoint it. 

That's one of the hardest parts about chronic illness. Sometimes we just have to accept a non-answer. We know it's not killing me, we know how to manage it to a degree, and going too far to try and find the exact cause might be dangerous, so better to accept it, move on, and live with it. 

It's at least one symptom of one of my diseases that I can hopefully put away until next year. File it away as "explored" and leave it in the Unsolved Mysteries folder of my medical history. 

And who knows - maybe in a couple years it will settle down or there will be a new way to look in the area that we need to. 

Annnnnnnd hopefully 2023 will be the only 'year of potatoes' I'll have to endure, at least for a while.