New to Ulcerative Colitis and the forum, have some questions...

Hi Everyone, long time lurker, first time poster.

Sorry for such a lengthy post, I'm just looking for some guidance through all this...

Diagnoses, Medication, BMs and Diet:
Diagnoses:
I was recently diagnosed with severe pancolitis. This has been very hard news to cope with, as I know now that my life will most likely be very different than it was in my first 22 years of life. This community has helped me do a lot of the research needed to begin wrapping my head around this awful disease.

Medication:
In regards to getting this flare under control, I was started on 40mg of prednisone (first time ever taking pred that I can recall). My GI told me that I should see improvement within a week, but after a week I felt like there was no change. After a week on 40mg I met with my GI last Friday (6/30/17) and the dosage was upped to 60mg (30mg 2x per day, morning and evening). So far, there has not been much improvement in the 6 days that I have been taking 60mg... Based on other posts here, it seems that prednisone is usually able to calm down flares a lot sooner than two weeks (at dosages less than 60mg/day nonetheless).

BMs:
Currently I am going urgently (out of nowhere sometimes) about 7-10 times per day/night. I haven't had anything close to a solid stool in what seems like weeks. When I do go, it is liquid, usually smelly (almost rotten? could this be malabsorbtion of any food I'm eating?), and mostly always followed by blood dripping at the end of each trip to the bathroom, with a lot of blood on the TP as well. Could this mean that I have some other form of infection in my colon that is not allowing the prednisone to work?

I am getting my blood drawn this upcoming Friday (7/7/17) to check if I am anemic, iron levels, etc (how can I make them check for C. Diff etc? or is that included in the blood tests?).

Diet:
I am taking the morning dose of pred with a banana, and some white bread with organic peanut butter spread lightly on it. For lunch I have been eating a PB&J (usually light on the jelly), and for dinner I have been eating a (low sodium) turkey and (low sodium) cheese sandwich on white bread. I know the cheese/dairy is not that recommended, but I usually experience more pain with chicken on the stove, and without the meat and cheese on the sandwich I feel so weak and depleted. Also, I am drinking plenty of water throughout the day. I have lost about 25 pounds in the last couple of months, and would LOVE to get this flare under control just so I can begin eating some more food and gain back some weight (even though I had a couple of pounds to lose before this all started... haha).


My questions now are:
1) Should I begin to think about admitting myself into the hospital to get on IV based prednisone?
1.5) Am I being impatient, and should I wait longer to see if the prednisone starts to work, or would it already have started working if it was going to?
2) Is it possible that I am not absorbing the prednisone correctly?
3) What foods could help with the absorption of prednisone? (If I am not absorbing it correctly now).


Moving Forward:
My GI has began the process to get me going on Remicade. I understand that this is usually not the first medicine people try, which makes me feel that my colon is pretty messed up...

Is it now standard to start on remicade without trying anything else? Are there any alternatives to remicade that work "better" that I should ask my GI about? I have read some about Entyvio (spelling?), and how it is more targeted to the gut as opposed to remicade targeting the whole body.

I am most likely going to start the remicade as soon as I get insurance approval, because honestly I just want to feel better... Question 4) Is it dumb to think that the remicade could help even though the high dose of prednisone has done basically nothing for my symptoms or do many people start remicade while on prednisone as well?


Conclusion:
Thanks to anyone that will read this and have any input. I feel so lost and lonely in this new world, just trying to get through each day hoping that I will start feeling better... I know this road is long and will have many ups and downs, so again I thank you for taking any time to read this and help me out!

Thanks,
C

Welcome to the forum. I'd ask for a stool test to check for infectious causes to your symptoms, like c diff (as extremely foul smelling stool can sometimes be a sign of it). Not responding to steroids is another potential infections sign. Even if you've had one fairly recently ask for a re-test for c diff as the stool test is prone to false negatives.

After 2 weeks you should have some sort of response from 60mgs of pred. Whether you should admit yourself to the hospital for IV pred is entirely up to you. It's hard for me to say from afar, whether it's appropriate, so entirely your discretion there.

Remicade works much, much faster than Entyvio does. Expect 6 weeks or less on remicade for a response. Entyvio is usually, at least double that. Given the shape you're in, I'd advocate for remicade over Entyvio due to response time. Also, getting Entyvio approved before other biologics is generally harder with most insurances.

There's no too soon for having any specific UC treatment, almost always lesser medications are tried first and if you do not respond or your symptoms worsen then it's perfectly normal to try stronger medications. Severe Pancolitis cases, pediatric cases, and cases involving a hospitalization often are started with the stronger medications earlier on as they're at the highest risk.

Prednisone is readily absorbed into the body, there are no tricks to it, no special foods to eat to make it work better.

If you're experiencing insomnia then taking all of your pred in the morning could help. I'd clear it with your doctor though, just to make sure.

When we're flaring badly, almost all food bothers us. General flare-safe foods are broths, soups, chicken, potato, and rice. All of those as absolutely bland, non-spicey as you can make them. Raw foods, fruits, and vegetables are generally harder on the gut than well cooked ones are. Generally stay on the low fiber end for your foods, as fiber is bulking and abrasive and that is not what you want when your large intestine is inflammed (therefore narrower), raw, and bleeding. Caffeine and alcohol can bother us when we flare, so generally avoid them.

Everyone is different, see what works well for you.

We've had success stories with both humira and remicade. They're both effective medications it comes down to: do you like Pepsi or Coke? Do you prefer: Ford or Chevy vehicles? It's the same with Humira and Remicade, both having advantages and cons over the other but both balancing out in the end. Pros are Humira can be done at home in a few seconds, doesn't involve an IV process at a hospital process with an attending nurse that takes 2-3 hours, and yes costs less (which is why your insurance prefers it). Cons are Humira injections are more frequent than Remicade, some say it stings, and you got to be okay with using the humira pens to self-administer.

I'm fairly new to this also but I've been on 60 mg of pred and took it all at once in the morning. It can definitely interfere with your sleep if taken close to bedtime. Why don't you ask your doctors for some butt meds? Either mesalamine enemas (rowasa) or suppositories (canasa) or steroid enemas or foam? My doctors never told me about or offered me any of those except the Canasa when I was first diagnosed, but he only wanted me to take it for a month. I only learned about the value of butt meds when I found this forum.

Good luck and hope humira helps you! I know how miserable this disease is. Also, am curious why your Dr isn't putting you on a mesalamine?

Hi FlowersGal and jerseyguy1.

Flowers, I am not sure why I haven't been suggested anything else besides prednisone --> humira/remicade. Maybe I am in such a severe flare that my GI doesn't think anything else would make a change? (Especially if prednisone isn't working on its own) my current GI's assistant said that using any butt meds would be like trying to 'piss on a wild fire' in the sense that it would do next to nothing, but I am under the impression that most bleeding occurs from the rectum, correct? ... Perhaps I should try to find a new GI for a second opinion?

Jerseyguy, those foods are listed on the low residue diet, which I have been trying to follow. It doesn't matter if I eat bananas or if I eat a turkey(or chicken) with or without-cheese, I bleed regardless, I'd rather try to get more nutrients while I can if the result stays the same...

It might not be necessary to get a new Dr. Why not ask your Dr if you can give the butt meds a try? You could tell him about the forum and other peoples positive response to the meds and be firm that you want to try them. If the doc then says no I would definitely start looking for a new doc. JTS important with this disease to have a Dr that listens and is willing to try new things. And a 2nd opinion can be good thing too in that it can set your mind at ease either with confidence in your old Dr or in finding a new one

Bleeding happens where the mucosal lining is inflamed enough to be friable....it's not limited to the rectum. UC starts at the rectum and continues upward. So, rectal meds are a help to all.

q

Until you take the first earliest steps to let your body deal, removing dairy and gluten, you will continue to suffer

Please be more careful with what you are saying. You might have a problem with dairy and gluten. I know I have a problem with gluten. But please don't generalize by implying that everyone else has a problem with diet. There is no need to antagonize the other members here.

Many veterans with years of experience with UC say that diet doesn't affect their symptoms at all. In fact dairy seems OK for me. I think the most that can be said is that diet May aggravate someone's symptoms and it may be worth investigating.

Yeah, I agree with the above posters about diet not seeming to have much effect. With the exception that sharp foods and foods that don't digest well like peanuts and corn DURING A FLARE seem to be a very, very bad idea.

I have a sneaking suspicion that once healed though, I'll be able to consume mostly everything again. I probably won't though as 4 months without sugar has left me not missing it a bit !

Please insist on your GI to do a stool test for C.diff infection :
Reason being :
1. Foul smelling poop- rotten smell.
2. Prednisone not effective
3. Watery stool

Please keep in mind that it is possible to get a false negative for the C. Diff test.
Gather all info related to C.diff so that you can connect it to your symptoms and move forward accordingly.

Best wishes..

Great to hear this, clafuu !