Should i Add/Change my Med

Hello Everyone,

I am relatively new, but I have been on these boards for the last year as I was trying to figure out what was wrong with me and got some great advise. First off, I learned you can absolutely have a clean scope and biopsy and still have ulcerative colitis. Smoking was able to heal my colon so much so, that it delayed the entire diagnostic process for me about 9 miserable months. Secondly, you must advocate for yourself. My GI dismissed me with IBS. Smoking had been keeping my symptoms in check, so i knew in order to really see the inflammation, I had quit. I also had to argue with my GI to do a repeat scope, his original argument was "biologicaly there would be some kind of sign of disease, the colon would not be able to heal itself so fast." Well.. After the second scope he came right over and said "Im sorry, You were right and I was wrong." Moderate Pan colitis.

Although for me Marijuana helps me get formed stool and helped hold my symptoms over, I abused it for so many year that i can not go back. However, through my experience there is undeniable proof that it can help some people with this disease... Just throwing that out there. 1st Flare I had a fecal cal-protectic of 1050, 1 week after returning to Weed, Clean Colonoscopy.

I Have Started 40mg of pred and 4 x 1.2g Lialda a day, although i feel better and i only go to the bathroom 1-2x a day (normal). The BM are not really close to being formed, I am having anal irritation, incomplete evacuation, and continue to have abdominal cramping/discomfort (Although a lot less severe).


My Question is should I be happy with this result? is this as good as it gets? Because i still am not felling great (80-85%) and am super worried about the symptoms returning during the taper. Shouldn't the pred shoot me back to normal? should I ask for rectal meds? which i am not apposed to. Do I simply need more time on pred 40mg? How long do I really need to take effect. I don't really have any side effects. Although i have pan-colitis, i think the distal inflammation is where the stubborn inflammation is and rectal meds may benefit. Also, i haven't noticed any particular food causing irritation (besides alcohol), anything i should try to avoid? I dont really want to increase the dosage of pred, but maybe a different Mesalamine or adding rectal meds, or something i dont know about.

Regards,
Al

The Number of Bowel Movements and Urgency was never really the biggest issue. During the worst part of my current flare, which is now controlled (i guess), i was going about 4-6 times. I suspected a mild case of UC, But based on the colonoscopy showing mild inflammation and ulcers all throughout, my GI considered the case moderate and prescribed 40mgs. My issue is not with the number of bathroom visits, it is just that i know there is still low grade inflammation present. I was going 1-2x several months ago and a fecal calprotectin test was about 200, While the normal levels are below 160 i believe.

Can a doctor really consider this remission?
Histologically, No... because there is still inflammation present.
Clinically, No... Because i am still experiencing symptoms.

Now i don't expect to be 100% right away, but many posts that Ive read people have wrote about being symptom free, so your post is a little discouraging.

Still, Thank you for the reply, i was hoping to get so advise on whether there is some kind of medication that can be added, or a more effective mesalamine to bring me into the normal range for fecal calprotectin.
An efficient test that measures the inflammation in the instestines, without the need for invasive scopes.

Al

albear99 said...
I Have Started 40mg of pred and 4 x 1.2g Lialda a day, although i feel better and i only go to the bathroom 1-2x a day (normal). The BM are not really close to being formed, I am having anal irritation, incomplete evacuation, and continue to have abdominal cramping/discomfort (Although a lot less severe).

My Question is should I be happy with this result? is this as good as it gets? Because i still am not felling great (80-85%) and am super worried about the symptoms returning during the taper. Shouldn't the pred shoot me back to normal? should I ask for rectal meds? which i am not apposed to. Do I simply need more time on pred 40mg? How long do I really need to take effect. I don't really have any side effects. Although i have pan-colitis, i think the distal inflammation is where the stubborn inflammation is and rectal meds may benefit. Also, i haven't noticed any particular food causing irritation (besides alcohol), anything i should try to avoid? I dont really want to increase the dosage of pred, but maybe a different Mesalamine or adding rectal meds, or something i dont know about.

With UC, our treatment goal is to achieve a remission, which is a total absence of UC symptoms, and everyone should aim for that. Are your symptoms as good as it gets? No, it can get a whole lot better. For me, a remission was 1-bm a day without urgency, no blood, etc. Remission means forgetting you have UC, not giving it even a passing worry or concern. You're normal and 98-100% yourself.

When we're on pred, we all worry about whether we can taper off without returning to a flare. It's a big unknown and all you can do is try and findout, sometimes we do not and sometimes we do (there's no knowing beforehand). Being on pred for about 2-months is often enough to shut-off whatever immune system attack event caused the flareup. If it is not, then we need stronger dosages and/or additional medications to achieve a remission and get rid of the pred (add immunomodulators: 6mp/azathioprine/imuran and/or add biologics:remicade/humira/entyvio).

I don't think 60-mgs of pred will be any more successful than 40-mgs. I never felt 100% on pred, but some do.

Certainly try rectal medications: mesalamine enemas and/or steroid enemas. They can help.

I've never noticed any particular issues with foods and UC symptoms, and thus eat whatever when I am doing well. Some notice food helps, but not everyone. Low-residue is worth a shot while flaring.

It can take a while for healing to happen. It makes it hard to know which is healing still happening, and simmering flare. Muscle wasting is discouraging to me too. On one hand, Prednisone can make you waste and feel tired, but so can inflammation.