What is a flareup like for you?

[Ang999]

I'm pretty new to the chrons thing and I'm trying to figure out what "normal" for me now and when I should be concerned. I think I've been in a flare up for about a year - that's how long it took to see the various doctors and have the various tests and get the diagnosis. I've been taking Pentasa for a while now without much improvement. I have mild to moderate symptoms most of the time - bathrooms trips - about 3-5 times on a good day and up to 10 or so on a bad day, lots of D and mucus, mild to moderate pain and unbelieveable fatigue. Last week though I had 2 days with significant pain right side - almost couldn't stand or walk. It went away and I'm back to "normal".

I know everybody's different but it would help me to understand what is "normal" if you could tell me what is "normal" for you.

 

[My Butt Hurts]

Hi Ang - welcome to the forum!
Yeah - everyone is different. For me a flareup is mostly a LOT of diarrhea. Up to 12 times a day. I rarely have pain with my Crohn's. I tend to get tired from losing nutrients so quickly, and lose my appetite too. The worst symptom for me is urgency. I need to get to the toilet within 15 seconds or it's not pretty.

Right now I am close to normal as I have been in over a year. I started prednisone right before I started Imuran and Remicade, and I feel fantastic.
Normal for me means that I don't have to worry about staying close to the bathroom. Right now I am even on a poop schedule! YAY! I go once or twice in the morning before I leave for work, and then I am usually good all day until the next morning. Even if I do have to go during the day, it's not an emergency. I haven't crapped my pants in months - yippee!
I am still watching what I eat for the most part, but am venturing out a bit more than when I am flaring.

Welcome again - and hope you find what you're looking for!

 

[Ang999]

I haven't booked my next appointment yet but the GI doc said to try the Pentasa for a couple of months and see if it would work. If things got worse I should go back to see him and he would repeat the colonoscopy and small bowel follow through.

He hasn't officially confirmed the crohn's diagnosis. Right now he is saying that I have crohn's like symptoms so he is treating it accordingly. I guess when I had the colonoscopy and biopsy done, it had all of the characteristics of chrons except granulomas - because that it missing he is not able to confirm the diagnosis officially yet.

I started Pentasa in Oct to Jan, then had a break waiting for another appointment (my fault that I didn't call sooner for an appointment). I've been back on it a month.

I didn't realize that was what was happening with the muscous. I think I'll take your advice and call and make an appointment.

 

[danman]

Hi Ang - welcome to the forum!

.....I haven't crapped my pants in months - yippee!

:ylol2: :ylol2: :ylol2:

Danny Wipes his eyes...

Oooohhhh dear....

A flare up for me is similar to MBH. Lots of toilet trips.
I no longer have the type of pain I used to have. I think that tends to go away after so many years, (What do you think Pen?).

Tiredness, loss of appitite, weight loss.
But flareups always coincide with fistulas for me as well.

 

[llake]

Hi Ang:

I'm sorry to hear that your flare up has been going on for a year now. In my case when I do flare is lasts for a few hours with horrible pain in my right side and bloody D. I only flare about once every one to three months so I guess I have what you may call a mild case although the symptoms when I do have them don't seem mild. Or maybe I'm constantly flaring, but my symptoms changed to just being C. Right now I'm kinda scared because I've been having jabs of pain and extreme discomfort all over my lower abdomen with mild C so I'm not sure what's in store with me. Anyways, I wish good luck to you and I hope you get better. Peace!

 

[teeny5]

I go to see the doctor (outside of normal visits) when my symptoms change. Like if I have pain in another area or pain that is different. Also I am not a puker so if I started vomiting I would go. I am not a bleeder either so if I had blood I would go as well. It is hard to tell you what normal is when normal is different for everyone. Worst case is you go and doctor tells you that you are fine. At least you know you are fine instead of worrying about it at home.

 

[Ang999]

Thanks for the advice everyone. I saw my GI doc yesterday. He said that although he couldn't confirm crohn's based colonoscopy, that "clinically" it's looking like that's what it is.

He felt that it was time to add Entocort with the Pentasa to see if that would improve my symptoms. He's also going to send me for a CT scan.

Does anyone know what a CT scan will show that a colonoscopy or small bowel follow through wouldn't?

 

[Menking914]

a CT scan can show any scaring or other things, but mostly it just gives the doctors something else to look at...gives them another thing to compare and helps them diagnose you.

My flare-up have no real bathroom problems, just severe pain in my right side, sometimes crippling pain, and this is even after surgery.

 

[bradraz]

Hey, well for me a flare up is ALOT of nasuea, not that much pooping because most of my chornes is in my stomach and esophagus. I barley have any if my small and large intestine. So i just feel like i am going to puke ALL The time. I ususally poop 3-4 times MAX in a day. It somtimes has blood, but it always formed.

 

[AIjen]

Gosh, I'd like to know what a flare-up is too. My diagnosis came very easily for me - I wasn't even looking for it! I had no symptoms as far as I knew. Constipation, but that was my whole life. I just went in for a routine colonoscopy and came out with Crohn's. I'm still struggling to comprehend this. And still can't give the nurse my symptoms, unless I'm bleeding (which I figured was just from fissures). Go figure.

 

[Procyon]

For me, a flare involves lots of intermittent abdominal pain and cramping. I can feel fine for most of the day, but I have this pain that comes and goes. Sometimes the pain is tolerable, but other times it makes me just want to double over. The pain generally tends to be worse in certain places, but it can be anywhere in my abdomen.

Then there's frequent trips to the bathroom, but I am usually able to control the urge -- it's a rare occasion when I feel like I need to make it to the bathroom in 5 seconds or I'll explode. Sometimes it'll be bloody, but that comes and goes.

When the flare is at its worst, I also tend to get joint pain, and I feel weak all the time.

Also, this isn't really a symptom I suppose. But I can "hear" my intestines. They make funky sounds all day, and I can feel things moving along in them. haha. And if I've just had one of the cramps that I described above, I can feel my veins in that area of the intestines pounding, or something. Kind of like you feel your temples pounding when you have a headache, only in your intestines.

 

[cheeky]

welcome to the forum...

for me, a severe flare up is intermittent cramping pain, lots of discomfort from bloating and an ongoing pain in my lower right side so it's difficult to move in certain positions (e.g. hurts to get in and out of bed or a car, going up stairs) also i can actually feel my intestine spasm (on my lower right side)... constipation, but no diarrhea ... fatigue (if i can pass out from painkillers, i'll sleep for hours on and off throughout the day)...and loss of appetite...

i've had flares that come on suddenly, to a lesser degree... for instance, i've recently learned that if i eat too much food, i'll feel very bloated, then get the intermittent cramping... then if i try to drink something, i'll vomit....the cramping/pain/discomfort/bloating will last for about a day or two then subside... so those are the milder flare up episodes

 

[duplessis3]

I get pains in my side, very severe, and severe nausea. With the bad pain I'm usually constipated. I much prefer the diaherrea 8 to 10x a day.

It coincides with stress too.

When I first saw my gp about the persistent pain in my right side, she said "Are you nauseous?" and I was all "More than usual? I'm nauseous more often than not." That's been a part of my life since puberty. I probably throw up once a month.

 

[kello82]

Does anyone know what a CT scan will show that a colonoscopy or small bowel follow through wouldn't?

in addition to what the others said about the CT, it also allows them to see your entire GI system at once. they can look at anything from the mouth to the rectum, whereas a sm bowel follow thru or any type of scope only looks at a specific area. a colonoscopy only lets them see the lg bowel, an endosocopy only looks at the esophagus and stomach...etc (dont quote me on this, its just what ive gathered from my own experiences with testing)

ive have a bunnch of CTs and they are good at showing abcesses or fistulas as well as scar tissue, i believe those areas show up solid white b/c of the contrast that you get.

 

[TheyCallMeRC]

My flare ups consist of nausea and D and high fevers along with pain in the lower right abdomen.

I also have a lot of fatigue.

 

[Jax]

Mine sounds exactly like procyon. I have that vein throbbing feeling right now ( for the first time in 54 weeks...booo). And the gurgles get so loud people always ask me if I am hungry- hehe which I am not. I get a build up of pressure followed by gurgles which eventually turns painful. It's either a slow process that builds over weeks and months or I go to bed feeling fine and wake up at 2am in the most excruciating pain. I vomit in a bad flare too even if I don't eat. Ah fun times. It is interesting to hear how different the same disease is for everyone.

 

[vicsnstix]

im new on here so here goes.. in november i was running toilet every half hour for about 12 weeks with vomiting etc. i repeadetly went to my doctor who sent me away every time saying i was lactose intolerant. i stopped eating dairy and milk but this didnt help. it got to the point where i was double over at work in agony going home every day early. on the last day i had to pull the car over and puke and decided i was going to the hospital cause i didnt know what was wrong with me and was on the verge of collapse. they gave me steroids and a drip, i also got a water infection at same time..was in hospital for a week and lost 2 stone in weight in just over 2 mths. ( which wasnt too bad!)
now 6 mths later im in a constant cycle of steroids, then the flu or some other cold type thing , then my stomach starts again then more steroids etc etc,.
they gave me balasizide but they made me worse, all weekend ive had very bad D and the pain is all across my stomach not just down one side, even my back is killing me, im so tired and every time i eat anything, within 10 mins i have to run for toilet.,everytime. i have been up 3 times in the night the past 3 nights and sunday night the toilet was full of blood, not just a little bit but everywhere. this has carried on along with mucous and pain and the doc has given me more steroids.
how can i get out of this cycle?
Its got to the point where my boyfriend is giving me greif about bein ill all the time , and he doesnt want a girlfriend whos always ill and tired, and even thinks im putting it on.. I just want get on with my life.

 

[Michaelw]

3 week flare up

Just now recovering from a 3 week flareup. Had the cramps and pain on left side for me. I have an iliostomy bag and it was nothing but liquid for those 3 weeks. With the bag I do have what is called seepage from my bum at times. I"m on comindin too for a DVT I had so during a flareup my seepage is definately bloody and abundent. Weak and tired all the time I set on couch and with pain killers in me sometimes fall asleep there off and on thru out the day. Thats how my flareups run and think this one was triggered by a cold even.

 

[JillianB82]

Well, from what I've read I've been going through a flare for almost a year now. I have lots of D, usually 3 to 5 times a day. When I 1st became really "sick" in Aug, I was going 15 times a day. I sometimes have blood in my D, sometimes have cramping, usually in the morning when I 1st get up. Every day is different, but my Entocort seems to be helping.

Good luck to you!

 

[jwoy42]

When I'm flarin', its do or die time when I start getting the stomach cramps. I have to make it to the bathroom pretty quickly and its usually 6-7 times a day.

My appetite definitely goes down and i find it hard to move around a lot. If I go to the grocery store within 20 minutes of walking around I'll have to get to the bathroom real quick. Luckily I have a job where I sit all day and don't have to walk around much.