Not really flaring but ALWAYS uncomfortable.

I wanted to see if any of you have had the same issues before with your UC.

I haven't posted here in awhile but in short, I have pancolitis. My diagnosis was December 2017. My flare was so aggressive that I had to get a blood transfusion and was in the hospital for two months. I was allergic to Remicade, and my body would not Prednisone. After they tried my luck with Tacrolimus, I was able to be discharged. I was on 15 or so prescriptions daily. They had to get my liver enzymes back to normal (severe damage) before they could begin me on Entyvio.

Entyvio began in February. I went through the regular regimen. Things began to slowly calm down. Once they put me at every 8 weeks and took me off Tacrolimus, I began having flare symptoms again. Bleeding, cramping, all of it. They put me on Uceris to supplement the Entyvio and also gave me some cort enemas. This helped improve things, A LOT.

In May they scoped me and determined that my levels needed to be adjusted. So since June or so I've been on Entyvio every 4 weeks. *And this sounds INSANE but previous to my scope in May I didn't even feel like I had UC anymore. Zero symptoms. But after the sigmoidoscopy, things were different. No bleeding, nothing like that, but the cramping came back and all of the odd intestinal disturbances.

They had me on Uceris for awhile into my Entyvio adjusted schedule. They took me off of it to see how things would go. Symptoms returned. They put me back on. They recently took me off of it (again) to see how the Entyvio does at this point.

What I've done that hasn't 100% fixed the problem but has controlled it to some degree is fasting. I started small with 10 hours, then 14, then 17, and now I do about 22 hours. I eat once every 22 hours and it controls the issue, to a degree, and it also makes the "issues" more predictable, which is nice.

So this portion is why I am posting here. My husband got his tooth pulled the other day and was acting like it was the end of the world last night because his mouth hurt and he couldn't eat. I ran to Whataburger and got him a small milkshake. I cheated on my fasting and got a small one for myself too (mind you, I never really eat dairy, but I was feeling okay so I figured why not).

My guts were hurting ALL NIGHT. There wasn't really any bowel movements or urgency but my guts were SO LOUD AND PAINFUL. I woke up to get ready for work and my hands were too swollen to put my wedding rings on. I went to slip on my shoes and they felt really tight.

My question is this: do any of you have consistent symptoms that aren't exactly related to bleeding and urgency? I feel like I always have a mild stomach ache, and when I eat outside of the fasting window, it gets worse. I can't imagine how I'd be feeling if I were eating 3 meals a day like most people.

Also my I saw my GI doctor the other day and she's convinced that the thing about my symptoms returning after the sigmoidoscopy is all in my head. She called in a few prescriptions for me. I forget the name of ALL OF THEM but one is supposed to help coat your digestive tract and prevent mild inflammation. She also prescribed me folic acid too because the other prescription will slow down/prevent absorption of it from my day to day foods.

ALSO she gave me an antibiotic ointment because I'm one of the rare UC'ers that gets skin lesions during inflammatory time periods. I have one right now on my stomach.


All of these little weird things are driving me insane?

Thanks for the feedback!


I kind of have always had a little weight issue. Once my first flare began, I lost about 25-30lbs because I became so sick. The first hospital I was at kind of abused me with Prednisone which made me gain back all of that weight (and more) and quickly. With all of the different opinions and restrictions surrounding food and my diet while I was in the hospital for those two months, I made note that something needed to change with my diet, once I was feeling better and able to experiment.
I've read a lot about fasting and it's benefits during that time. I'll never be able to be a "champ" and fast for days at a time, but fasting for 14-20 hour periods really helps me feel a bit more regulated. Gives me energy, and makes me feel pretty great all around. I know it sounds miserable but it's kind of fantastic, as strange as that seems. Low FODMAP/Low fiber diets can sound complicated when you begin looking at the restrictions. But if you're really only planning one meal a day, this can help lessen the complication and even help you narrow down what helps your guts, and what hurts them.

I started out with only eating between 12PM and 8PM. All meals stop at 8PM and resume the next day at 12PM, then repeat. So I'd fast for 14 hours (really, most of that would be during sleep time) and start again at lunch and have an 8 hour window where I could eat whatever. So really, all that was doing was skipping breakfast.
I tuned it a bit, and now I just eat dinner. More energy, better mental clarity, etc. Before when I'd "graze" (as I call it) throughout the day, it'd be on junk mostly. Drinking flavored coffees, having cookies, anything of the sort. Fasting cuts it out. If I'm going to eat one meal a day, it's going to be something healthy and satisfying.

But of course, not every regimen/diet works for everyone, and I understand that! But back to the UC:

It looks like after December it is going to be the big decision my doctors make. I've been on Entyvio with most of it being on a 4 week regimen (for a year) and if they finally decide that it isn't working out for me how it should by this point, then we're going to need to seek out other options, certainly. I'll do some research on the one you mentioned! I haven't heard of it before.