Flaring for a year Advice on meds Needed

Hey everyone so I've been flaring for a year. Lowest 18inches inflammed, I've been on nightly meslamine enemas for the last 4 months or more, and Asacol 800hd 3x daily. I have a new Doc, and he has me on Lialda or Asacol 800hd for the 4.8grams. I say or, because I still have Asacol left, and he gave me a prescription for Lialda. I've been on Lialda 2x 1200mg pills morning and night for 3-4 days now. My stool was a little loose today on the 2nd bm, with just a little blood, no mucous either. The first one was loose as well but that was all. Not sure if it was something I ate, or if the lialda isn't working. I'm also taking steroid enemas but only had a 14 day course. I have 7days left. I swear I think I do better on meslamine enemas. So a few questions. He wants me to try imuran (scared to death of that, with the cancer risk.) I've had testicular cancer, and my 1st cousion had lymphoma so the big C is close quarters with me and my family. Should I just do pred? I've never had to do pred before, so that makes me nervous. Should I go to morning and nightly meslamine enemas or maybe steroid E in morning Meslamine at night, or is that too much? Or should I give the lialda more time to work? I've previously been on meslamine enemas nightly, and 3x 800hd Asacol a day. I've started eating spinach cooked into my eggs cause I've heard great things about spinach. I'm only having minor bloating, no more than 3 trips to bathroom a day, and somedays none at all, and blood like once a week, if the last 2 weeks hold. No pain, really. Just not right. Thoughts, advice, anything?

and why are you posting the same stuff on 2 different threads ?

I am not sure I understand "flaring for a year" and "stool a little loose" - was it worse, and the higher dose of mesalamine got you symptom improvement?

if the mesalamine is now not strong enough, adding something else makes sense. typically Imuran is added. More recently, standards have been saying go right to biologics.

your personal and family history with cancer means no one here can really advise you. a doc who is tracking both you UC and cancer history is needed. I am not sure if your cancer history raises your risk of colon cancer from UC. But there is generally a small cancer risk if you do or do not use the meds - just changes the type of cancer.

maybe you can get a consult with the oncologist who treated you before.

What are you seeing an oncologist for again?

Meneieres disease and Interstial cystistis aren't cancers.

Oral mesalamine is dosed up to 4,800mgs a day during UC flares, and you are taking less than that. You could ask for a prescription for an increased dosage.

Are you taking a 4,000 mg mesalamine enema nightly? If not you should be.

You could go on both the oral mesalamine and 6mp, as combination therapy seems to be the best approach to treating UC. I've been on 6mp since 2012 and have yet to have a side effect from 6mp. Side effects are rare. The Crohn's and Colitis Foundation of America has a good risks versus benefits read/watch on medications like 6mp. I found it helpful when initially deciding to go on 6mp:
Webcast: programs.rmei.com/CCFA139VL/presentation/player.html
Transcript: http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf

I had testicular cancer at 19, 33 now. I just started the dose of 4800 this week, I'm on day 5 I believe. I've been at 2400 for the past year. Any time frame for how long I should wait to see improvement on 4800? I am currently taking a corticosteroid enema at night, for 14days, I have 7 days left. Then I have 2 weeks worth of the meslamine enema. Ipoop, I saw on one of your posts talking to someone that you had to take the meslamine enemas twice daily, to get a flare under control, is that right? If so what was the best game plan for that?

Thank you so much! I'm going back in next week to have an appointment, and I just left a message asking about staying on the enemas longer, my last GI said 3 weeks of steroid enemas was all I could do. I truly believe I am right on the cusp of remission. Here's hoping and praying

iPoop said...
"Any time frame for how long I should wait to see improvement on 4800?"

Mesalamine works pretty quickly, with results being typical in about 3 weeks.

"Ipoop, I saw on one of your posts talking to someone that you had to take the meslamine enemas twice daily, to get a flare under control, is that right? If so what was the best game plan for that?"

This past summer, I started seeing a reappearance of a mild flare with blood on tp, more bms a day, and mild urgency. My gasteroenterolgist put me on rowasa/mesalamine on two Rowasa a day for 2-months and that cleared it up. I hadn't heard that discussed much here, seemed effective and far less invasive for pred for a mild flareup. So, mention it in similar situations here.

"I am currently taking a corticosteroid enema at night, for 14days, I have 7 days left."

You can ask for a refill, some of us have been on steroid enemas for multiple months.

What is the mesalamine dosage of Rowasa enemas? 4g or less?

Did you take one at night and one in the morning?

Joe8417 said...
4g one at night. I have a few more days left of the steroid enemas. Until I came here none of my docs have suggested morning and night. Went 5 x's today first one was ok'ish, next one was very loose with some blood, 3rd one was small brown broken up pieces, and 4th one was loose broken up with some maroonish blood in toilet and on paper, last one just happened, just a small little amount but mucous and blood maybe the size of a quarter. Since upping my dose of meslamine to 4.8 (when I switched to lialda) my stomach has started hurting all around the mid section, very achey, where it wasn't before on asacol. Maybe it's just coincidence I have no idea.

Interesting... I switched too from Asacol to Lialda and, after a couple of weeks, I started to have abdominal pain between the sternum and the belly button and slow and difficult digestion, which feels more like related to the stomach than to the colon. I have wondered myself if the culprit could be Lialda...

Have you tried to go back on Asacol?

"What is the mesalamine dosage of Rowasa enemas? 4g or less?"

4.0 grams of mesalamine and 60ml suspension for my rowasa enenas. At the time i was taking 4,800 oral mesalamine plus 8,000 mg mesalamine via enema. A grand total of 12,800 mgs daily. Plus all the other uc meds I'm on (6mp and remicade). Uc can be one heck of a monster...

anything is possible - in the UC world, and well in the regular old world - only way you can know with any amount of certainty is to try something different - and probably more than once -

the truth is, it really is totally individual - your body, including your fricked up colon, is yours, for better or sh!thitsthefan worse -

some folks do have a problem with mesalamine - not common but it do happen - and different breeds affect folks differently too - some do better with lialda vs asacol -

you've signed up for a lifetime of guineapigism - get use to it -

Low fiber is actually recommended during uc flares.

again, it all depends on whether or not your colon will handle it - most folks during flares have a hard time handling any food - but fibre can be harder to digest than other things -

and all fibre is different - pretty sure all fruits and veggies are considered fibre - some folks do ok with some fruits but not others - same with veggies - in other words, try something and see if it works or not -

suggesting ? not sure what that means -

so what is YOUR plan then ? are you just planning on taking the pred only ? what about butt meds ?