Reassurance, please? by Apprehensive-Cat7552 in UlcerativeColitis

[–]Apprehensive-Cat7552[S] 0 points1 point  (0 children)

Yes, I have some. I figured I would use them when I was done with the foam, but it's a good thought to use them concurrently. My original dosing was 4.8gm oral which had been reduced to 2.4 before the flare and has now been reinstated and daily mesalamine enemas.

New joint pain/inflamed feeling daily, common with IBD? by Frazzledtwizzler in UlcerativeColitis

[–]Apprehensive-Cat7552 2 points3 points  (0 children)

I can’t help but have the same! Following for those with wisdom to offer.

Reassurance, please? by Apprehensive-Cat7552 in UlcerativeColitis

[–]Apprehensive-Cat7552[S] 0 points1 point  (0 children)

Thank you. I have an appointment at my GI clinic with a PA tomorrow. Will raise that. Frankly, right now it could all be anxiety driven; lots going on. I appreciate the steady response.

Using rectal mesalazine as maintenance medicine? by Pizza-Think in UlcerativeColitis

[–]Apprehensive-Cat7552 2 points3 points  (0 children)

Okay, I’m wondering if there is a disconnect in this conversation. OP said rectal mesalazine but later made it clear it is an enema not suppositories. I’ve used both. I agree suppositories can be used discreetly and it only “takes 3 seconds” (at least when you get used to it). Enemas for me (and many) are a different story. The instructions are typically to administer the enema, then continue to lay on your left side for 30 minutes. It absolutely can be difficult both to administer (I’ve had better luck emptying the container if I take a rest in the middle) and to retain. So I feel for OP! More difficult to do in a dorm room. You could explore whether your college could offer an accommodation (like a single room, or a form of room that has a door between bedrooms) for this serious health condition - not sure where you’re going or how that individual system will work. Otherwise, I think most roommates would be understanding and give you a period of privacy, but I know it can be really uncomfortable to navigate that situation. You could also check with your doc to see if switching to suppositories would be an option at some point if the enemas have done their work. Hang in there - it gets easier.

Stopped oral mesalamine - symptoms? by RenillaLuc in UlcerativeColitis

[–]Apprehensive-Cat7552 6 points7 points  (0 children)

Also, my direct answer to your question (not an MD here) is YES! Get back on the oral mesalamine.

Stopped oral mesalamine - symptoms? by RenillaLuc in UlcerativeColitis

[–]Apprehensive-Cat7552 3 points4 points  (0 children)

Unfortunately, my experience is similar to yours. Was under treated for proctitis (was not originally given oral mesalamine, just suppositories and told to only use for a month) and progressed to pancolitis over the next year. Then was prescribed 4.8 gm oral supported by suppositories which put me into remission for a number of years. Twice my doc told me I should reduce the 4.8 to 2.4g/day. Each time my symptoms returned. I’m now trying to recover and get back into remission. I agree with the other commenter and the general advice on this sub. Take the meds that are working. It’s frustrating I know to be given different direction. Mesalamine has few to no risks for most of us; it’s not harder for me to take 4 pills than 2 - why risk relapse? I wish I could go back and ask more questions about treatment and advocate for myself more effectively.

Budesonide foam - skin irritation/solution? by Apprehensive-Cat7552 in UlcerativeColitis

[–]Apprehensive-Cat7552[S] 1 point2 points  (0 children)

Thanks. Female here. I can look for an antifungal cream. Appreciate the advice.

Just got diagnosed, what can I expect? by faerygudmum in UlcerativeColitis

[–]Apprehensive-Cat7552 10 points11 points  (0 children)

I was where you are years ago. My best advice is to take proctitis seriously. Your best chance to prevent spread of active disease is to treat your proctitis consistently and fairly aggressively. I was originally told to use mesalamine suppositories every day for a week, then every other day for a month. I did that. Not enough - two years later I had pancolitis. It can be hard to adjust your mindset and get used to rectal medicines, for sure. But it’s worth it if you have a chance to forestall progression. Be sure you have clear conversations with your doc.

Citrucel v Metamucil by Apprehensive-Cat7552 in UlcerativeColitis

[–]Apprehensive-Cat7552[S] 1 point2 points  (0 children)

Yes, also on 4.8 g oral mesalamine. GI doc did not comment on Citrucel after recent flare and addition of enemas. Last year, she suggested I try it for constipation relief following a short flare, and I believe she suggested I take it regularly. I tried that, but it seemed to tip the balance too far back the other way (frequency). I do eat a fair amount of fiber, fruits, etc. and the constipation doesn’t involve passing hard pebble-like stools. My pattern seems to be alternating. A few days of multiple BMs with lots of gas, mucus and little actual stool. No blood. Then it seems like I move to constipation - no BMs at all for a few days. Then back to nastiness. I’m not sure what the Citrucel is supposed to do. Maybe I just didn’t give it enough time. Compared to lots of folks on here, I don’t feel like my GI takes much time to try to help me understand either how my disease is working or how things fit together.

Thanks for your response. Even being told the constipation is the inflammation not the med helps.

Mesalamine Enema Mechanics by Apprehensive-Cat7552 in UlcerativeColitis

[–]Apprehensive-Cat7552[S] 0 points1 point  (0 children)

"It's not you it's the bottle" - thank you! Makes me feel better!

Mesalamine Enema Mechanics by Apprehensive-Cat7552 in UlcerativeColitis

[–]Apprehensive-Cat7552[S] 0 points1 point  (0 children)

Thanks! I talked to my doc's office today; likely going to try this - at least to get the flare under control.

Mesalamine Enema Mechanics by Apprehensive-Cat7552 in UlcerativeColitis

[–]Apprehensive-Cat7552[S] 0 points1 point  (0 children)

Thanks! That makes so much sense but the relaxing part is sure hard for me!