Just diagnosed last week...at my wit's end

It is really hard when you get diagnosed as you have no clue what to expect. With time you learn what works for you. In your case if you have pan-colitis, you may need prednisone. They have horrible side effects if you take for long time(I took for a year) but for short term, mainly weight gain and mood changes were main effects for me.
Get prednisone and up Asacol like everyone said it will help you get in remission. Also try to use rectal medication Rowasa(enema) and/or Canasa. They will help with urgency.

Once you are in remission, never stop your maintenance medication.

Hope you get into long remission.

Just want to chime in on the prednisone side effects. The ones people are reporting do occur, however, it is important to let you know that not everyone gets them.

I stopped myself from taking them because of all the horror stories I read. Big mistake. That decision landed me in the hospital for 10 days with discussion of removing my colon because my flare got so out of hand. I ended up getting them IV then oral. All the worry for nothing and not only did they save my colon, but I hardly had any side effects. I did not gain weight, did not get acne, did not have mood swings, did not lose my hair, did not have a ravenous appetite. I had extra energy which was great. Got a little extra facial hair that went away as soon as I was off them. Getting to sleep was a little difficult, but once I slept I was out and I was healing so I wasn't waking up every 2 hours to run to the bathroom. Not saying this drug is good for you, but it helps manage things or give remission until you find meds that work.

I agree with the others that you under medicated. Rectals are a must for urgency. Entocort will not work on a severe flare especially not at that dosage.

One other thing, please do not let that post regarding immunosuppressants scare you. I'm getting tired of these few individuals who keep calling it chemotherapy. Firstly, the dosages are not the same as those given to cancer patients. And stating hair loss and vomiting as a side effect after aligning them with chemo makes it sound like your whole head of hair falls out. The only thing that ever made me lose hair ( and by no means was it even noticeable) was a flare. I was on 6MP (immunosupressive) and though it didn't agree with me I never had any such side effects. Vomiting? Please, I was vomiting green bile during my flare not on the drugs when I was well.

I'm another person who never got any bad side-effects from pred. If anything, being on the highest dose did me a world of good and I would have stayed on it permanently if I could. But in the long run pred is a disaster zone for the body, and very hard to get off if you stay on it for too long.

RockerGirl is spot on with her comments about immunesuppressants. I've been on 6MP for six months and the only side-effect I had was some very mild nausea for the first few weeks. Oh, and increased photosensitivity, which isn't much of a problem in the UK but might be more of a problem in a hotter, sunnier climate. That went away once I had built up a light tan.

Let me be clear that my post about immunosuppressants was not intended to scare but rather inform. It does not matter what you call the drugs .... immunosuppressants, immunomodulatirs, chemo drugs - it is what it is. No point sugar coating it, especially when the drug does not cure the underlying problem. Immunosuppressants are old chemo drugs, so hair loss and vomiting are a fact. As to dosages - absolutely, the dose for UC treatment is far less than for a cancer patient. However, a cancer patient has an intensive treatment with the drug for a relatively short period of time. Unlike a UC patient, they are not on the drug for a life time. After 30 or 40 years on these drugs, who knows the effect. Like I said, short-term gain, long-term loss.

GC4249 said...
Let me be clear that my post about immunosuppressants was not intended to scare but rather inform. It does not matter what you call the drugs .... immunosuppressants, immunomodulatirs, chemo drugs - it is what it is. No point sugar coating it, especially when the drug does not cure the underlying problem. Immunosuppressants are old chemo drugs, so hair loss and vomiting are a fact. As to dosages - absolutely, the dose for UC treatment is far less than for a cancer patient. However, a cancer patient has an intensive treatment with the drug for a relatively short period of time. Unlike a UC patient, they are not on the drug for a life time. After 30 or 40 years on these drugs, who knows the effect. Like I said, short-term gain, long-term loss.

If hair loss and vomiting is going to happen, it will happen at the start of treatment, not several years later. I've been on these drugs several times, one way or another, and have never had vomiting or hair loss.

I dunno what would happen after 30 or 40 years, but I'm less scared of 6MP than I am of untreated Crohn's. I'd also rather be on medication that worked than go through surgery ever again, but each to their own.

Exercising and limiting salt intake (I got crazy cravings for salty food) will help. The worst of the side effects of prednisone happened for me towards the end of my course. And they subsided quickly after ending them. I've been on it 4 times and each time I hit my wits end the last 2 weeks of treatment. I get moon face and facial hair with prednisone use but it's temporary.

Take this advice as you please, but as a woman in my 40's who through my 20's and 30's was consumed by physical appearances...this is a short lived necessary evil for the time being. Now as a mature (and I'm only using that term to not call myself old) I see that health and well being both mental and physical outweigh everything else.

You're young and have a fast metabolism and vitality on your side.
Keep us posted!

I feel ya. Told my husband I'm ready to dance naked under a full moon, while dancing the cha cha if I thought it would work.

In all seriousness... Diet is individual. My theory is, it's coming out either way so may as well enjoy it the first round.

So I stopped taking the antibiotics yesterday and my colon is constantly cramping today, I suspect because the good bacteria were killed off. I'm also bleeding a little for the first time since the day after my colonoscopy....not happy. Can I take Symax Duotab or Bentyl with my Entocort and Asacol to calm down the spasms? When I was on them they completely did away with 95% of the painful cramps, just not the urgent rushes. Doctor took my off Symax when he started my new meds last week.

Or do I need to let my body expel the waste since I don't have any good bacteria right now?

PS. Also taking probiotics.

Post Edited (Canaveral) : 9/23/2016 8:22:40 AM (GMT-6)

Doctor is having me do something weird though -he wants me to up my dosage of Entocort to two (total of 6mg) just for today, then decrease it back to 3mg tomorrow, THEN start the Prednisone day AFTER tomorrow.

Does this pass the litmus test?

I always take Bentyl with my flare ups. I don't feel like it helps me much, but maybe my cramping would be twice as bad without it (though my cramping is pretty severe even while taking it). I would just double check with your doctor since he took you off it. The only concern is that is slows down motility, but if you are constantly going a lot then that wouldn't be an issue.

I totally agree with taking the 40 mg all in the a.m. I have always taken it that way & I actually start off with 60 mg in the a.m. when on it. Do not take it on an empty stomach. It can be very harsh on the stomach. It tastes gross so swallow it fast. Also make sure to drink lots of water and low salt intake to reduce water retention. And take calcium while on it and do weight bearing exercise if you feel well enough.

The Entocort thing makes no sense to me. I was recently on Uceris which is similar to entocort. I was on 9 mg and no tapering was necessary. Really what is the point of increasing the entocort for a day. If it were me I would start the prednisone immediately, but I don't want to tell you to go against your doctor.

Good for you advocating for yourself. We have to do that a lot with this disease. You need a new GI in my opinion. Call back and tell the nurse you want to start the pred immediately. Why wait to get worse.

For some reason my doctor says I CANNOT take the Symax while I am on the Asacort. Not sure why he doesn't want me to up the Asacort.

"Your doctor is just so stupid and shouldn't be in this profession."

Haha, thanks for that. I think you're probably right, and I definitely appreciate the honesty. I don't think he's a bad doctor, I just think he probably has little experience with this disease.

For that matter, I wonder if it really is UC after all. Ugh. Is it possible for another GI to confirm or deny UC based on the images from my colonoscopy?

Sometimes prednisone works near instantaneously other times it can take up to a few weeks to work. Everyone responds differently.

Your file can be transferred doctor-to-doctor often digitally, and your diagnosis goes with you. You can switch doctors but often there is a waiting list to get in another specialist practice that can take months. I'd certainly explore other doctors if you don't have full faith in his/her abilities or just don't work well with his/her personality.

We all end up getting multiple colonoscopies or at least flexible-sigmoidoscopies with biopsies over time, and additional tests will clarify your diagnosis. Sometimes diagnosis changes but it's not extremely common. You can ask for copies of your biopsy report and colonoscopy report. It's helpful to have, as it indicates the various clues of what they saw. If there's any ambiguity then it'd say. Any doctor could look at them for a second opinion, but most would ask for their own scope to see exactly what's going on now.