HealingWell
Search Close Search
☰

Newly diagnosed: How do you know if the medicine is helping?

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 5/18/2018 4:45 AM (GMT 0)
I was diagnosed exactly two weeks ago with UC right after the colonoscopy, after suffering for more than a year. I was out on Asacol tablet and salofalk suppositories that day and have been taking them for the last two weeks. My follow up appt with the gastroenterologist is in 7 days and I'm getting a bit nervous, as he said that if the Asacol doesn't help then I'll have to go on steroids. I have other family members with IBD who have taken or are taking steroids and they all say that it sucks really bad.

So... the first week after the colonoscopy my body was super unhappy. I caught a cold and at the same time my insides were clearly very irritated because I was going to the bathroom about 30 times a day, including 4-5 times at night. That started to settle after about 5 days and my body went back to its usual, pre-colonoscopy 10-15 times daily and only twice at night schedule. In the last four days, I have started having solid stools, sometimes brown, sometimes black, and only rarely mucousy (sorry, tmi), instead of liquidy or mostly mucousy - but I'm still going around 10 times a day with lots of urgency, and twice at night. So... does that qualify as helping? Do I need to give it more time? Is that the first stage of the medication helping?

Thanks for your input!

Post Edited (Plume) : 5/18/2018 12:56:06 PM (GMT-6)

Posted 5/18/2018 12:44 PM (GMT 0)
2-weeks into treatment, you should start seeing some big improvements soon. Although, Mesalamine can take 3-weeks, sometimes 4-weeks to show a big affect. If you're asking "How do you know if the medicine is helping?" then it is clearly not helping much or at least not enough if you are doubting its effectiveness. It could take more time, or it could take stronger medications. If it was working, then your bms would go from 10-15, to 6-8, to 3-4, to 1-2, and continue showing improvements in total, frequency, increase in firmness, decrease in blood, etc. There's a lot of trial-and-error when treating UC, with the 1st, 2nd, and sometimes even 3rd attempts not being right. So, it is not unusual to need to adjust medication dosing, add more meds, etc. It can be frustrating for us, but unfortunately that is common.

It's common to have an upset your system for 2-3 days after a colonoscopy, the procedure is invasive, the prep harsh, and the biopsies can upset things further. We all do bounce back to our norm shortly though. I would not count bouncing back from your post-colonoscopy upset as an improvement, at all.

What dosage of asacol tablets are you taking? The maximum between 4,000mgs to 4,800mgs a day (depending on formulation) is recommended.

Is your UC limited to your rectum (an Ulcerative Proctitis)? If your UC extends further up the left side then a mesalamine retention-enema (asacol/pentasa/salofalk/rowasa enema) is recommended.

Yes, we all have a love/hate relationship with prednisone. We love that we can feel better within days or a week, with it's rocketship-fast relief. We hate the side effects. Sometimes pred is necessary, and with 10-15 bms a day then I would say pred is necessary for you.
Posted 5/18/2018 3:35 PM (GMT 0)
I would highly recommend mesalamine retention enemas before trying steroids. It sounds like you have “stabilized” but haven’t really improved. I saw a big improvement about a week after starting Rowasa (sulfite free in my case) Make sure you ask your doctor about them.
Posted 5/18/2018 5:00 PM (GMT 0)
Hi, how extensive is your U.C. (left-sided, proctitis, pan)? With those symptoms I'm surprised that they didn't put you on steroids. Mesalamine is for mild to moderate, and for maintenance of remission.

Steroids suck, but in general they are the most effective anti-inflammatory for U.C., the trick is to get off them as fast as you can and let the mesalamine keep you in remission. I am one of the lucky ones that has minimal side effects from them if I keep the course short.
Posted 5/18/2018 6:55 PM (GMT 0)
On the colonoscopy they found "moderately active ulcerative proctitis" so that was my initial diagnosis. However, I just received ed the biopsy report and the biopsy shows inflamatiom in the sigmoid colon as well, so I'll have to as the gastroenterologist about that next week.

I was probably started on just mesalamine because anything else would be an overreaction for moderately active ulcerative proctitis, right?

I'm taking 3 Asacol 800s twice daily so I'm already taking 4800mg per day.

Thanks for all of your input. Hopefully the Asacol starts helping more soon. I would so enjoy being able to eat breakfast and lunch on a work day, and maybe putting some of the weight that I lost back on...
Posted 5/18/2018 7:27 PM (GMT 0)
Inwould strongly suggest you push for 4g salofalk retention enemas.

Welcome to the forum

Patience with 5ASA meds....and Ive only used steroid enemas once in over 39 years.....diagnosis same as yours.

Hang tough.....we can help with tapering, etc. No use in worrying about what you are at this point.

q
Posted 5/18/2018 8:34 PM (GMT 0)
With a 10-15 bm frequency, this case is clearly severe inflammation, and in need of steroids. Foolish steroids were not initially prescribed.
Posted 5/18/2018 11:40 PM (GMT 0)
4gm/60ml mesalamine enemas are a no-brainer for procto-sigmoiditis if you're not allergic to them. Your symptoms sound like severe but the scope says moderate, so that kind of puts you in a gray area.
Posted 5/19/2018 6:12 AM (GMT 0)
Oh, BTW, if you really want to avoid steroids, you can do 2 retention enemas, one overnight and one in the morning, however most insurance companies won't cover it. That has got me off the ledge a few times. You do need liver/kidney labs if you do this though, as that is a lot of mesalamine. It's never been a problem for me luckily.
Posted 5/19/2018 6:55 AM (GMT 0)
I was going 15 - 20 times a day....no systemic steroids...ever.

Try giving the topicals....5ASA mesalamines and steroid combos can give great results with faithful treatment. Experience will give you that.

Keep us updated.
q
Posted 5/19/2018 10:37 AM (GMT 0)
While steroids can have side effects and people tolerate them differently I would argue that those side effects are rarely as bad as a severe flare and for the most part temporary if you don't get dependent on them.

I can say when I was first diagnosed I was going 15-20+ times a day and night with blood. I was tired, in pain, no appetite and had lost weight so I was underweight.

40mg of prednisone got me down to 1-2 times a day with solid stool and no pain in 3-4 days. I got extra energy from the predisone (can be good and bad as some can get manic/irritable) and the extra hunger was only good. It was an incredibly feeling to be feeling healthy again after you have been so sick for months often.

I've had more flares and Pred usually works for me (though not as quick as the first time) and the side effects for me is weird energy, slight irritability sometimes, hunger, some acne, some swollen face but that is a trade off that is so much better that being in a severe flare. Remember that inflammation is something that is not healthy for you either.

So I don't deny that people have much worse side effects and that it is different for everyone but I think one should at least try them if they are in a severe flare.
Posted 5/19/2018 6:12 PM (GMT 0)
chcl.....How long did it take for you to get off the pred? And are you on any meds at this time?
q
Posted 5/19/2018 8:18 PM (GMT 0)

quincy said...
chcl.....How long did it take for you to get off the pred? And are you on any meds at this time?
q

That was when I was first diagnosed 20 years ago and I could taper down with 5mg a week after the first week and it got me into remission. There were some flares later I was really sick and while pred still helped it did not help as well and I kept getting flares again after a while, 6mp did not do much so I did get Remicade (max dose even) for a almost two years until I got off it. When it came to Pred I have almost always been able to taper pretty quickly so I've been lucky there.

These days I don't seem to get as bad flares anymore. I had one around 2 years ago and before that it was another 2 years and both was helped with 40mg pred. And with that flare everything went really quickly. I noticed some loose stools, then a week later blood and running 10+ times a day; got my pred and then pretty much in remission two weeks later.

I think part of that is because the last years I've been on Mezavant and that seems to work much better for me than Asacol. Currently that is my only medication and I'm taking 4.8mg.

I might be getting into a flare now but hopefully I can avoid it.
Posted 5/20/2018 4:25 AM (GMT 0)
Keep in mind rectal meds....😁

q
✚ New Topic ✚ Reply