New to the forum, major flare

Hi all,

New to the forum.  Diagnosed with UC about 4 years ago up to 32 cm.

Been on Asacol 400 mg 2 or 3 pills 3 times a day since diagnosis except for a period of remission where I only took slippery elm.

Trying to come out of the worst flare of my life...

Called my GI BEGGING for some prednisone to get the bleeding stopped...he refused and told me to keep the Asacol at 9/day and add Rowasa.

Also decided to run C diff, enteric pathogen and parasite tests on me...no results yet but God only knows WHY he would insist upon these when I have been diagnosed with UC and have had no exposure to these things AFAIK.

Experiencing symptoms of anemia which doesn't surprise me considering the amount of bleeding I've had for almost 4 weeks now.

This really has only made things worse.

Today, i decided to stop taking mesalamine altogether...will see what happens.

 

A GI refusing to give prednisone, that's a first. I can't say I disagree with him completely. They should make this med illegal if you ask me.

"Also decided to run C diff, enteric pathogen and parasite tests on me."

This one is a smart cookie lol

Has your doctor ordered blood tests?
- A blood count to check for low hemoglobin or a high white count.
- CRP or ESR to check for overall level of inflammatory activity.

You could go to urgent care and perhaps get a small supply of prednisone. The urgent care doc may want you to follow up with you primary care or GI for a longer term supply. Prednisone has helped me greatly at times, and mostly without objectionable symptoms. When taking 50mg/day I felt happy, energized, and got a ton of stuff done. Some people hate taking prednisone though. Different doctors have different ideas about treatment. If you feel like you are not a good fit with your current GI, schedule an appointment for a second opinion with another doctor.

Is bleeding your only symptom? If so, your GI may think your flair is only mild and can be treated conservatively. A spoonful of blood in the toilet can often seem like a huge amount when it's really not. Have you had an increase in BM frequency, having diarrhea, urgency, pain, cramping or other symptoms?

I have been having 20+ BMs/day, diarrhea, with quite a lot of blood and mucus. Very painful and violent. Massive cramping and stabbing pain. Can't get more than one hour of rest at a time bc I spend most of the night in the bathroom.

Last time I had a flare I ended up in the ER, had prednisone in IV and bleeding miraculously stopped. That's why I requested it from my doctor. Can't figure out why he would refuse it.

I had CBC done on hte day I dropped off my stool sample, but no results yet.

Kazbern: And I am beginning to think the mesalamine does me more harm than good esp when in a flare. That's why I quit taking it.

Up until 14 days ago I was having 40+ trips to the toilet... severe cramping and bleeding. After being on Pred now I am able to breathe and there is some semblence of normal. The bleeding is very minimal now and much fewer cramps with about 7/8 bms. I think you really need to push your doc on this since it has helped you before or ask for a different GI. worst case go to the ER and ask for the same treatment you got before...

geeker,

Welcome to the forum.

I am sorry you are suffering so.

How about getting a new doc?

This one doesn't seem to be listening...

In which way do you think the mesalamines were making you sick?

Arre you still on slippery elm ?

I have an appointment with GI Friday. Today will be my 2nd day without mesalamines. I am noticing a slight improvement of symptoms. Frequency of trips to bathroom has decreased already. Still bleeding. Cramping is MUCH less.

Other things I take besides Asacol and Rowasa are Vit D 5000iu, Vit E, coconut oil, krill oil, tried butyrate and l-glutamine but was in the midst of this flare and was unsure whether it was helping or hurting.

Something just clicked in my mind this weekend that the very Rx I use to treat this disease was causing it, or at least adding to it. After the GI doc increased my dosage of mesalamines my symptoms increased.

Same with Nexium...I had heartburn for years. Got Rx'ed Nexium. Didn't help all that much. Rx was doubled. Still no relief. Fought this for at least 5 years. Discontinued Nexium because I thought poorly digested food could be compounding my UC symptoms. Guess what? No more heartburn after I discontinued the Nexium.

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geeker said...
"After the GI doc increased my dosage of mesalamines my symptoms increased"
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This is new information. Maybe you should have dropped down to old dosage?

Regards

HurtbyUC: Symptoms were already horrible, that's why I called GI begging for Cortifoam. He responded by increasing mesalamine, which then made it WORSE than when I called.

Pluot: I will only take the Vit D and E today, per your suggestion. Will forgo krill and coconut today.

Maybe I will take some l-glutamine or slippery elm to try to protect what's left of my mucosa.

Also I hope to receive results from lab testing today.

Forgot to add that I take Florastor with colostrum. Also I drink some Yakult (IDK if this qualifies as kefir or not) Thinking of asking for VSL3 at my appointment on Friday

 

geeker - if you've been using msalamine for all this time without problems, then it is not causing you issues. It is the safest treatment for UC and you should stay on it (and add the enemas) while you take the steroid.

Welcome to the forum.

You shouldn't stop taking your meds, its usually not a good idea. If the GI doesnt want to give you the pred he should think of something else. Best of luck!