New, Insight Appreciated

Hi Everyone,
First of all, I wanted to say thank you, this forum has helped me a lot with info that wasn't available anywhere else. Being able to read about what others were going through made me feel... not alone (sorry).

I'm a Female 35 years old.
My journey started in February 2020. Bleeding and diarrhea. Ignored it for about a month since.. well.. I don't know. I only decided to make the appointment because my SO was freaking out.
Went to the doctor and was told it was probably internal hemorrhoids. Was told to come back for a sigmoidoscopy.
April 2020, sigmoidoscopy comes back as ulcerative proctitis. The NP really played it down too.. So I didn't understand what was really going on.
(Covid really didn't help the, getting doctor's appointments situation.... )
I was put on mesalamine and on a plant based diet (which by the way, I was already a VERY healthy eater).
Mesalamine did nothing. Did not change the bloating, diarrhea, or bleeding.

I had multiple follow ups and since the NP was useless, I asked to be referred to someone else. And I guess I made such a stink about it I ended up with the head of GI in my hospital region.

He was much more attentive to my symptoms, went in for bloodwork constantly, and tried to schedule me for a colonoscopy but with the covid protocols, it was close to impossible for me to get into those hospital doors.

That whole time my symptoms didn't get better but it didn't get worse.. at least not until..

Around January of 2021, I started having to go to the restroom about 6 times a day.. every week it would increase by 1 more time. The bleeding was slowly getting heavier. And some symptoms that I didn't know (still not sure) were being caused by my UC, was getting worse. I had sores that wouldn't heal on my chest and my hands. Teenager like breakouts on my face, ulcers under my tongue, bloating and really dull uncomfortable pain when laying on my sides and the worst was the fatigue.... I'm a competitive athlete and it was tough trying to keep my regular schedule of working 40 hours a week and training 16 hours every weekend. I would go out and train on a saturday for 1 hour and I was done. I even got to the point I was popping caffeine pills every hour to keep me going. ughh.

Colonoscopy scheduled in the beginning of April. MRI scheduled in March.

Fast forward to my flare. By the time of my flare in March, I was going around 12 times a day..
During the start of it, I was just having uncontrollable bowel movements with immense cramps immediately after I ate.
I went in for my MRI and it showed 3 quadrants of my colon inflamed. My C protein reactive levels came back at about 30. (not that bad yet, at least compared to the height of my flare)
about a week after my MRI .. hell broke loose.
I felt "really off" on a Saturday morning.. And then by that Monday I couldn't get out of bed. I was throwing up, fever, diarrhea, you name it, I had it. I actually thought I had caught covid.. Toughed it out until Wednesday, and by that time I was certain I was dying. Went to the emergency room, did a CAT scan and bloodwork.. CAT scan shows my entire colon inflamed and C Reative levels are now shown as <100.....
The ER doctor won't give me meds. Calls GI, GI Closed. Let's me go back home.
GI calls me in the morning, talks to me, prescribes predisone, anti nausea medication and a meslamine enema.
Colonoscopy in 1 week. I had to tough it out. Went from 140 lbs to 115 lbs in 3 weeks. At 5'7 I looked decrepit.
Symptoms slowly got better. I wasn't dying anymore.. but it was still bad. And to boot having someone do colonoscopy PREP during a flare is INSANE.

Colonoscopy showed that my entire colon was "friable" top 3 quadrants are covered in ulcerations and bleeding. He looked straight into my eyes and said, It's worse than we thought and on the mayo scale you're at a 3.

Now I am being weaned off the pred and have started Entyvio. The bad part of the symptoms are now at a very tolerable state.

Sorry for the long read. I had a few questions

1. Is it normal to break out on my face like this? I haven't had breakouts like this since I was 15. When I was on 50mg of pred, the breakout disappeared.. and now it's slowly coming back hence why I started connecting the two.

2. Anyone have experience on Entyvio? How long before you saw remission?

3. How do you guys combat the fatigue?

4. Is it normal to freak out every time anything feels off in my stomach now? I have so much anxiety that I might go backwards or go through that again soon..

5. One of my eyes, has floaters.. or extra stuff in it constantly, since that also went away during the high does of pred, I'm thinking that has to do with the inflammation in my body. Did anyone else experience this? And if so, how did you deal with it after being taken off pred?

Thanks for reading, and thank you for allowing me to vent.

Hi,
Welcome to the UC forum.
Sorry to read your struggles.
Hope prednisone and entyvio combo gives you long remission.

As for your q's:
Break outs: Your break outs are the side effects of prednisone. Steroids poses wide range of side effects. Side effects vary with people. Hopefully it will subside once you are out from it.. Remember to taper it very slow when you reach 10mg.
Entyvio: Response time vary with individuals. DD responded positively within 1week. Many here have good responses to Entyvio.
Fatigue: It is common to have fatigue especially when flaring- as your body is fighting inflammation and nutrients are not absorbed . Prednisone side effects adds to it. Nutrient rich soups /shakes are good if your colon tolerates.
Anxiety: Once diagnosed -anxiety is our companion in various levels . It is natural and will get better once remission kicks in.
Floaters: Have not experienced so not sure what causes it...

Take good rest and care . Prednisone mask symptoms so try to have soft /pureed easy to absorb foods .

Best wishes..

Sorry to read about your diagnosis being delayed due to pandemic environment: truly a nightmare scenario! It sounds like you initially had ulcerative proctitis that extended upward and became pancolitis. You had best pursue treatment with a gastroenterologist experienced in following IBD patients. The essential need for everyone DXed with IBD is to wean off Prednisone ASAP because it causes many lasting side effects to one's body with lengthy use, such as osteoporosis & cataracts. Therefore, if your current doctor has determined that mesalamine meds don't help reduce your inflammation, your will need immunosuppressants like Imuran (Azathioprine) or biologics like Entyvio. If you're in the U.S., have a look at Website of the Crohn's & Colitis Foundation (CCFA) for further info. This organization was established ca. 1967 by gastroenterologists & IBD patients at Mt. Sinai Hospital in NYC, where Dr. Burrell Crohn had 1st identified the IBD variant now known as Crohn's disease. *** What you can do for yourself daily apart from taking med(s) is to rest as much as possible while flaring, eat a nutritious diet free of irritants like heavy fats & spices, raw produce, caffeine, and supplement essential vitamins & minerals such as vit D, calcium, & iron-- depending on blood test results. Plain boiled white rice, eggs, skinless poultry & fish, natural applesauce, & bananas can help to reduce diarrhea. Best wishes for you to feel better soon! / Old Hat (40 yrs with left-sided UC; in remission taking Colazal)

Been on entyvio for 4 years now and happily in remission. No side effects. I was in about the same state as you when I started it although prednisone did control my symptoms. I couldn’t wean off it without symptom return though — so we started entyvio. I started weaning off prednisone with my first infusion and was successfully able to taper off for the first time in a year. By month 4 I was symptom free — however it’s important to note that in those 4 months there was great progress so it’s not like it was 4 months before I felt better. I was probably much improved by 2 months and that was without prednisone too. I did have some mild symptoms along the way but uceris foam and mesalamine suppositories helped with those. Also important to note that a colonoscopy around month 5 still showed microscopic inflammation— so complete healing takes awhile.

Fatigue is the last thing to go away in my case. It took a while before I could do my regular walk without having to rest for the rest of the day.

Good luck! Keep us posted on your progress.