Just diagnosed with UC. Help, advice and encouragement needed

Hi Allan. Believe me I know how you feel as I felt same way two yrs ago. Urgency, constant loose or watery stool, or just blood and loose stool, and waking up several a night with cramps and sudden urge to go. Feeling like I might as well just park myself on toilet and never get up.

But, finally went to the gastroenterologist and had a colonoscopy which showed moderate to severe UC with 25 cm of sigmoid colon affected. He had me on Prednisone 60mg taper for a good six weeks. Then after the scope switched me to Lialda 4 daily, along with Canasa suppositories nightly. This drug regimen has significantly reduced all the above symptoms and now able to leave the house without worry. This treatment with mesalamine doesn't always work for everyone but it generally is the first level of treatment drugs for UC and if that doesn't help, there are several other classes of drugs that people are given to help put their UC into remission.

I do feel sorry for all the young people on this forum who have UC and still need to try to hold down jobs outside their homes. It has to be so stressful. I am retired but do part time work from home so that helps.

But to answer your question, the flare you are currently experiencing doesn't last forever. Your gastro doctor should be able to get you under control with the proper drug regimen. It took me about six months on my Lialda before I really felt a lot better. I too lost about 25 lbs while flaring but gained it back once under control. And yes everything you have mentioned sounds typical. And, food wise I stuck with bland foods, toast, scrambled eggs, soft chicken, baked potato or mashed. This seemed to help me.

Allan, you may want to include what your exact diagnosis and medications. Going 20 times a day is NOT light. That's how I flare and it is awful. I'd be interested to hear where exactly your inflammation is...i.e.) proctitis (in that case rectal meds would help a lot). You can create a signature in settings and that way each time you post it will list your current meds and diagnosis.

Just know that you are not alone and you will find something that works for you whether that's diet, medication, or natural remedies.

Welcome Allan !

My best advice is for you to recognize the fact that this disease manifests completely differently for each individual. I think you already do though.

And no matter how bad you feel right now, there isn't any reason to put your life on the firing squad. You CAN reach a state of feeling normal again.....many others have and you can too.

Stress isn't anyones friend, but it's even worse for those of us with this condition.....walking in the woods with my dogs ---sans phone---was a huge helper. I read voraciously about this condition (still do) but tamped any anxiety down just as often.

Good for you for realizing you are an experiment of ONE, keep a food journal and notate how you feel. Ask questions here or search the forum for old threads. Lots of gold here !

Thank you. There is nothing coming out. Just a tiny bit of mucus served with a generous helping of cramps and nausea. I do need to drink more.

Thank you again. Just drank a whole bunch of water and two slices of toasted bread. Hardest thing is sleep right now. I wake up every 5 minutes needing to go.

First, your case is severe-grade inflammation if you are going to the bathroom 10+ times a day. You are under-medicated to say the least. You should be on prednisone at, at least 40mgs a day in addition to the medications you are currently on.


"1) when can I expect the meds to work? "
You should get a response within a couple weeks with the asacol and suppository. Prednisone will make it much, much faster of a response. Call your gasteroenteroligist, tell him/her how bad your symptoms are and that you want prednisone.

"2) will it be like this forever with 50 trips to the bath room a day (surely, that would make anyone punch the ticket) "
No, UC is characterized by periods of flares where our symptoms are in full-force (what you are experiencing now) and periods of remission (that is an absence of all UC symptoms) where were we are essentially normal. In a remission I have 1-bm a day, no urgency, and my bms look essentially pre-UC with a great quality of life and no UC worries at all. I live normally without any signs of UC. Remissions can last 2, 3, 5, 8 or more years in a UC patient with a sufficient maintenance medication treatment plan. Flares do eventually happen to us all, but they are generally infrequent, short, and mild when we are well treated.

"3) is there anything that remotely safe to eat?"
When we are flaring, every food will disagree with us. Generally it is recommended to keep with bland, simple, well-cooked, and nonspicey foods. Things like broths, soups, potatoes, chicken and rice. Alcohol and caffeine can aggravate our symptoms.

I really, really appreciate that all of you have taken time to write. Thank you!

My UC is in the descending colon, the sigmoid colon and the rectum. Proctitis? I was able to follow the whole procedure and had a wonderful colonic adventure in full color. Samples have been taken from various places but I am still waiting for the results. Hopefully, I will get them tomorrow.

I was diagnosed with pancolitis a month ago, that means my whole colon was inflamed. I was going to the bathroom over 10 times a day.

I have started the specific carbohydrate diet, and have had a lot of success so far. My symptoms have nearly disappeared. I beg you to read the book Breaking the Viscious cycle by Elaine Gottschall and read it cover to cover. Follow the diet exactly, including the intro diet. It has worked wonders for me, but only when i have stuck to it exactly- when i expanded the diet too quickly i felt it. There is always hope.

You will beat this if you are relentless. Work on improving all aspects of your health- get full nights of quality sleep, meditate, try yoga, lift weights, do some cardio, green tea, cold showers, eliminate allergens, try affirmations, etc. Accept the challenge that UC presents and embrace it!

Thank you all. Last night was the first night of being able to keep the suppository in for more than five minutes and the intense sense of urgency is a little lessened. I'm on toast, eggs and a little rice.

I will give an update tomorrow when I have spoken with the doctor

Hi Allan. I read your post and just wanted to offer some small token of support. I was diagnosed with pancolitis in May, and it's safe to say i'm still a complete novice on the big picture (everyone on here is helping me along the knowledge road!!).

However, i can tell you that in the weeks before my diagnosis my life had crumpled in to blood and mucus obsessed mess. I was tied to the toilet. I started to be too afraid to come to bed in fear of accidents. I was exhausted and losing weight fast. I was completely unable to work. And all thats aside from the humiliation i felt in front of my partner because of what was happening to me.

Post diagnosis i started Prednisone and Pentasa and the improvement was both fast and remarkable. I had none of the side effects that some people talk about - it was a god send. Within a couple of weeks i was almost back to 'normal'. Now i'm off the pred i have a couple of issues to resolve still, but even with those issues, life has got going again.

As said above, everyone is different and results will vary person to person, but i just wanted to reassure you that once you have the right meds, things can come good again. Good luck with the doc.