Help? First - timer on here!

First of all I would like to say that I was diagnosed with ulcerative colitis 25 years ago. I have used this forum on and off and I am grateful to everyone who has been posting. I cannot tell you how many times I have looked at this forum in the middle the night trying to get some answers while I sit on the toilet.

Now for the first time, I’m joining!

I was in a flare last year from January to September, it finally faded away and I was extatic. I believe my flare was brought on by stress. My GP and I achieved remission through various drugs always a combination of oral and rectal masalamines, and some corticosteroids rectal enemas. He did have me try prednisone low-dose for 5 days, it did nothing.

Fast forward to one month ago. I start to get stomach cramps at night, nothing like I’ve experienced with UC. I few days later I have terrible diarrhea. I realize I have a stomach flu. It triggered my UC. I usually begin to flare slowly with UC, but this was full blown. I interrupted our family ski holiday, and Ran home to get my mesalamine pills and took prescribed 6 pills a day (400mg). Sometimes I took 8 pills. I felt a bit better but it didn’t last long.

I went to the doctor to get my rectal meds, enemas and suppositories. I asked for the highest dose of each to try and get this flare under control. I am going to the bathroom 20+ times a day with diarrhea, mucous and some blood.

Two night ago I held in the 4g salofalk enema all night, then proceeded to take my 1000mg suppository. I also took some pills through the day. I was not feeling good yesterday though. I thought the enemy woulI was not feeling good yesterday though. I thought the enema would be the answer to my prayers. I have severe diarrhea yesterday. I wasn’t feeling good either. I started realizing it just felt like too much in my body. Almost like an overdose.

So here I am stopping all mesalamine for 24 to 48 hours. Can someone help me to know where to go from here? Should I still use my 4g enema But only a small portion of it in the nights to come?

Of course like many of you, I am at my wits end. I thank you for any suggestions anyone can give.

Gratefully,
Nat

I do not take maintenance meds, I realize now, I should be. I feel like the doctors I deal with (GIs in the past and now GP) are just guessing at what’s best just like me. This disease of course is ever changing.

I have the requisition for the stool test (at my request) but I haven’t gone yet. I somehow feel doubtful they’ll find anything.
I will make myself go.

Thx

Welcome to the forum. Always glad to convert a long time lurker to an active poster!

You need to:
1.) See a gasteroenteroligist-specialist, get a stool test for possible infectious/pathogenic causes to your UC, and a test for inflammation (a FCP stool test, CRP blood test, or endoscopy).
2.) Take maintenance medications, on a daily basis whether you are feeling good or bad. By stopping your meds, you likely caused this flareup. Not taking maintenance meds often makes your UC worse in extent and severity, necessitating much stronger medications on an ongoing basis thereafter

In the mean time, please continue taking your enemas and mesalamine pills on a daily basis as prescribed. You shouldn't just abruptly stop them "because they aren't working." They are still having an affect, it might not be a 100% effect but there is some help from them. Conversely, stopping them likely will make the flare much worse. You might also need prednisone again (20-40mgs a day to start), and/or stronger medications like thiopurines/biologics.

My GP and I are trying to see what works, this is not an exact science. I was absolutely overmedicating I could tell by the way I felt and the intense diarrhea. I did read on this forum that so much mesalamine can create worsening effects.

I did feel a bit better today but will continue the oral meds and enemas both in smaller doses. I will not use the suppositories for a bit and see how it goes.

Thanks for your advice!

Nat

I would not trust a GP to manage my UC but then i am a rather severe case..and i take drugs only available at a hospital pharmacy

Post Edited (poopydoop) : 3/7/2019 11:08:59 PM (GMT-7)