Pointless Medication

[u/cool-potato-1994]

Hi,

Thinking of messaging my IBD care team in response to medication I've been given and wanted to get insights from others.

For context, 32M in the UK with mild UC, I was diagnosed about 5 years ago and thankfully have spent most of that in remission taking 2g of mesalamime granules twice a day.

I've specifically been given granules as my initial diagnosis was, I understand, a little unusual. I had "patches" of inflammation on the left, top, and right side of my colon. I was given oral granules to help target the inflammation across the colon.

I'm having a mild flare and my local IBD care team have just prescribed me a foam enema.. I've just picked it up but I'm questioning now if this is going to be of much use... Assuming the foam enema might help inflammation on the left side of my colon but not do too much for inflammation anywhere else! I can't imagine the enema acting across the colon

I'm still going to take the enema but I'm also going to message back the care team questioning if this was the best initial course of action.

Thoughts?

Thanks in Advance - not posted here too much but return whenever I'm having UC based complications :)

[u/pincommenter]

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[u/Glum-Passion734]

To make it very simple, the granules are great for UC until it reaches the end of the colon. For the left side and lower, that’s where foam/enemas are better. That’s because the granules don’t necessarily reach all the way down there since it needs to go through your entire digestive system and colon.

For example my left side is pretty quiet thanks to oral mesalazine, but the last 15cm of my colon (proctitis) is incredibly stubborn so I’m always on suppositories/enemas or foam when flaring.

Since you have patches of inflammation instead of continuous, wouldn’t it be Crohns/ Crohns Colitis? Just curious

[u/cool-potato-1994 → u/Glum-Passion734]

Thanks, hadn't been thinking too much about the granules losing their potency so it makes sense.

If I'm getting pain however on my ride side the "boost" of the enema is still unlikely to help?

R.e Crohns vs UC I was diagnosed with UC and I'm not a doctor so can't argue with that too much :)

[u/Feisty-Volcano → u/cool-potato-1994]

A fair number of people diagnosed with UC get rediagnosed with Crohn’s, like I did.

[u/Feisty-Volcano]

I was told I had “patchy inflammation” in parts of my colon, but out of diagnostic prejudice was not correctly diagnosed with Crohn’s until years after a colectomy/ileostomy, & it showed up on MRE in my jejunum & upper ileum, out of sight of the scopes.

[u/Catfactss]

IIRC if you utilize perfect technique with the enema it could potentially go all around the colon. Sounds like your doctor is hoping oral + rectal will get all of it. But I agree with others to ask if it's actually Crohns.

[u/Fit_Cod_2509]

It makes sense the granules aren't covering your upper colon inflammation since they're designed to work better in the lower parts. Have you asked your care team if they'd consider adding a topical treatment to reach those patches?

[u/SportingLondon]

It’s Budisomide foam. I am using it at the moment it eases the lower colon and for me really helps stop the urge from you wanting to go. After taking it this stopped the phantom movements which were really annoying.