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Is this what a flare is like?

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Ulcerative Colitis
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Posted 3/26/2018 10:00 PM (GMT 0)
Just looking for some advice/personal experience here...

I'm currently coming up on my third dose of Entyvio - My doctor took me off of the bridging-medication (Prednisone, Tacrolimus, etc) about three weeks ago. I've been fine for the most part since I've been off of them, a little achy here and there but nothing extreme.

I've been seeing traces of blood in my stool (like, only at the very end of it), and I've been a little more achy than usual. My doctor's nurse told me that the blood probably wasn't a cause for concern if it was mostly just on the TP and not coloring the entire bowl red (because this happened to me in December with my UC, looked like an animal was slaughtered in the toilet), she checked my chart and said I had hemorrhoids and that was most likely the culprit...I guess they found those when I had my last 'scope done, but never mentioned it to me.

So! This is my issue. My eyes were bigger than my stomach yesterday, and I ate some super spicy fried chicken (yes I know, excellent idea) - Since then I just feel a general burning/abdominal achy feeling. It's not intense, it's just dull and uncomfortable, all accompanied by the same slight bleeding.

Stools are mostly formed - The only way I can really describe it is to say...Fluffy? Does that make sense? Haven't hit that magical week-14 of Entyvio yet. So I'm still hopeful it's working.

Any thoughts? Should I be terrified? Am I in the 30% of people that Entyvio isn't doing anything for? Panic is ensuing.
Posted 3/27/2018 2:48 AM (GMT 0)
I wouldn’t necessarily consider it flaring but flares are very individual. Some have constipation, others diarrhea with mucus and others all blood. Typically a flare is urgent, increased frequency, blood apparent in stools and pain. What were your original symptoms. I would lean towards hemorrhoids as the blood is on the toilet paper only.

Now...I personally wouldn’t risk eating fatty, spicy foods until I was scolded and had confirmed remission. As tempting as it may be, find yourself solid remission then slowly add in foods.
Posted 3/27/2018 4:21 AM (GMT 0)
Original symptoms were slight, but considering it took the doctors such a long time to determine what the issue actually was, it spiralled out of control and put me into the hospital for two months solid.

Original symptoms too place in June 2017. I'd feel a little gassy/bloated after a big meal. This was easy to brush off and toss antacids ontop of and dismiss. The longer it went on, blood was present, mucus was present, but it wasn't a whole lot, maybe just enough for there to be a pinkish color on the toilet paper.

I underwent treatment for potential stomach ulcers, hemmerhoids, the whole nine yards. Then one day something clicked, like a light switch. In November 2017 just after Thanks Giving, severe abdominal cramping came on that would NOT stop. My GI doctor ordered some tests. I tried to wait it out but I ended up going to the emergency room, they ran a series of tests and told me I had a simple stomach bug, and sent me home.

Shortly after my GI doctor called to tell me that I had an extreme amount of white blood cells in my stool sample, and that she'd need to see me to get scoped ASAP. I woke up from the colonoscopy to my GI doctor explaining to me that I had ulcerative colitis and was extremely anemic due to the blood loss. I was immediately admitted into the ER.

It was a lot of back and forth. Had to get transferred after being at the first hospital for so long without any results. The GI team over there threw their hands up into the air, not knowing what to do. My body hated Prednisone. I was allergic to Remicade and received severe liver damage due to a single dose of it. I developed a CMV infection, which they didn't know I had when they gave me the Remicade, so it was a double punch to my liver, which prolonged my infusion schedule because I couldn't receive an infusion if my liver couldn't withstand it.

It was all a nightmare. I've been out since late January, trying to manage. First infusion was February....I'm nowhere near feeling like I was, not even a fraction of it, thank god. But I'm just not sure how people figure "I'm having a flare"...

* I might add, currently looking into meal replacements shakes of some sort for awhile, to give my guts a rest as I go further with my infusion schedule. If anyone has any thoughts, that'd be great.
Posted 3/27/2018 12:49 PM (GMT 0)
"Is this what a flare is like?" Yes it sounds like you've got a severe flare going on with the hospitalization and escalation to biologics. You're still within a flare and have yet to experience a remission.

"The only way I can really describe it is to say...Fluffy? Does that make sense? " Yes, had fluffy stools byself, they're what I'd call semi-formed, halfway between solid and loose. I had fluffy stools when flaring and going 4-6 times a day or so.

"Any thoughts? Should I be terrified? Am I in the 30% of people that Entyvio isn't doing anything for? Panic is ensuing." Flares are pure misery, we've all been there and can relate. We can all relate with the anxiety about will my current treatment work, while we wait for it to work. It drives us bonkers and all we want is a yes/no. The odds are in your favor but there's no guarantees.

There is a solution for you out there, and you will get better. Try and stay positive, try to control your anxiety before it runs wild. Whether it is entyvio, additional medications, or even a surgery then there is a good quality of life out there for you and a solution to your UC. One of the great things about the forum is that we have posters who've found success in so many different ways and do well with them. It puts the mind at ease that even worstcase scenarios have solutions and a good quality of life afterwards.
Posted 3/27/2018 4:39 PM (GMT 0)
I can't tell you how much that little bit of positivity helped me today.
Posted 3/27/2018 4:58 PM (GMT 0)
If I've made you smile, laugh, or think positively for a moment then that's a big win smile

We've all been there, at the bottom of a bad flare and need a glimmer of hope. You're not alone, we've all been there. It's yin and yang, flares are hell and remission is heaven, and UC is both at different times.
Posted 3/27/2018 7:29 PM (GMT 0)
My third infusion is tomorrow - Hopefully it gives me some relief. This isn't anywhere close to the worst flare I've had, luckily. Discomfort is just never fun.
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