Rollercoaster Flare

[xJillx]

I have been battling a flare (or what I assume is a flare) for the past week or so; the only true flare was pre-diagnosis a year ago and what led me to the GI office, so I am still new at this. But this one is so crazy! I have bad days, but then good days. I think I am doing better, but then I have another bad day. Here's a run down of the past week:


Saturday, July 16th – 10+ BM’s (very loose) and lots of blood and mucus; not a lot of pain

Sunday, July 17th – Only passed a little B&M once; felt better

Monday, July 18th – 10+ trips to the bathroom, mostly just B&M; lots of abdominal pain and flu-like symptoms

Tuesday, July 19th – Very loose BM with B&M after fleet enema for scope (scope didn’t show any inflammation, just some redness); felt ok

Wednesday, July 20th- Nothing; felt pretty good

Thursday, July 21st – Small loose BM with mucus; felt pretty good

Friday, July 22nd – Nothing; felt great

Saturday, July 23rd – 5+ BM’s with M&B; lots of rectal pressure/pain – started a course of cortisone enemas before bed

Sunday, July 24th – One loose BM, but little M&B; felt great

Today – Already 4 trips to the bathroom with very loose BM, but little mucus and no blood seen. But my stomach is very uneasy and I constantly feel like I have to go! It’s going to be a tough day to get through work.


What the heck is going on? Has anyone else gone through a rollercoaster flare like this? I am trying to rest and eat cautiously, but I am not sure it is helping. I hope the cortisone enemas will do the trick. I have my goddaughter’s baptism on Sunday which is in Maryland (3 hours in the car – ah!), and I obviously have to be there!

 

[Jane]

I fluctuate as well. Going from 1 fairly solid bm one day, to 5+ soft ones the next day.

I'm still trying to figure out what I should be eating when I am starting off on a flare. And if there is anything that I can eat or avoid eating to keep the flare from getting really bad.

I hope you feel better soon!

 

[chrisnsteph1022]

I can't say I've ever had a rollercoaster flare. It gets bad and stays bad, and once it starts getting better (after several weeks), it keeps going that direction.

 

[KaLa]

Hi, Jill. I have had similar symptoms before (I have UC, not Crohn's). I am actually going through something similar now, without (knock wood) blood and mucous (althhough I though I saw a little jelly-like blood a couple of times). I have been avoiding red and orange foods to monitor myself better as to if it is blood or not. I think that starting to take iron set of another flare. I will have "normal" BM's one day, and diarrhea or really loose the next, and it keeps changing. I was just coming out of a really bad 2/3 month flare and I thought that I was getting better. After I started taking the iron supplement I started to get really crampy again and went back on my meds. I only take meds. when I'm having a flare, as I try to stay away from all medicine -I know many disagree with that, but that's how I've been for around 20 years. I am currently using Rowasa enemas which works for the bleeding since my UC is on the lower left side. It sounds like you are just starting to flare or that it's partially under control with the meds. because you're not having bleeding every day. What does your doctor think since he only saw red patches and no bleeding with your scope? I hope that the steroid enemas help. How long do they usually take to kick in? I hope that you start to feel better soon - especially before the long car trip!

 

[Cat-a-Tonic]

Jill, although I'm still undiagnosed, I've had rollercoaster flares like that too! It seems that my pattern is, I'll have a lot of d (and pain and nausea, etc), get pretty much completely emptied out, then feel somewhat okay again and get hungry. But when I eat something, that's when the pain and d come right back. It's like my guts are angry in a flare, but they relax a little bit when they don't have to work, but then get really riled up when I ask them to digest something and that's when they go crazy. Have you been tracking what and when you're eating? If you've noticed a similar pattern with emptiness/food, you might want to consider a liquid diet of Ensure or Boost for a day or two. Either that or just the blandest, safest foods in small amounts (if you're not doing that already).

Good luck, I hope you're able to get out of this flare soon! You mentioned going to a baptism, I know how miserable it can be to take a long car ride when you're flaring. I had to go to my husband's grandfather's funeral during a flare and that was only an hour car trip, but I still had to make hubby stop a couple times so I could use gas station bathrooms. There was no way I could have missed that funeral so I understand your predicament with having to be at an important family event! You may want to bring a "just in case" kit with extra clothes, wet wipes, etc in the car with you, and I hope you don't have to use it. Feel better soon!

 

[xJillx]

@KaLa - My GI expected to see activity from the scope being that I had bright red blood. She said bright red blood should be coming from the end of the colon; if it were higher up, it would be dark. However, she didn't see anything jaw-dropping (her words). She is a bit perplexed with my case. Though I received a diagnosis from my first GI, my current GI still has some doubts. I will have a full colonoscopy in September, though, to investigate further.

@Cat - I have been thinking of popping my head over in the undiagnosed club, actually. As I explained above, I am in this weird limbo state. My current GI is having doubts I have Crohn's (which I think is rediculous being that my first GI diagnosed me immediately after a colonoscopy which showed inflammation and ulcers in my TI and rectum). She had even suggested perhaps I had a GI infection that left me with severe IBS. However, I think my current flare is putting some of her doubts to rest. However, I don't think she will officially call it Crohn's until my biopsies show chronic changes...

 

[Cat-a-Tonic]

Jill, that's got to be so frustrating to have a doctor doubt your diagnosis! That kind of thing frightens me, to think that I could get a diagnosis but then have it taken away or doubted like this. I'm sorry you're in limbo, and you are more than welcome to come vent or get support or hugs from us in the Undiagnosed Club. I haven't been in your position of having a diagnosis doubted, but I certainly understand the frustration of being in a flare, having obvious symptoms, and doctors not being able to figure me out or find the cause. Sending lots of happy thoughts and hugs to you. I hope the c-scope in September puts this limbo business to rest once and for all!

 

[Goldfish]

Hi Jill. That's awful that you are having such a rotten flare (not that there are any good ones). Have you got any idea of what may have started it or did it come out of the blue? I totally agree with Cat that you should take a "just in case" kit. If nothing else at least you can be confident in having some back up. I hope things calm down for you before the baptism.

 

[xJillx]

@Cat - I think I certainly have Crohn's based on my first colonoscopy and symptoms. Perhaps, it is just in its early state. Regardless, I think my GI just won't be happy until biopsies confirm it.

@Goldfish - This flare has been so unpredictable, that's for sure. The thing is, I was doing so well. May, June, and early July were really quite good. So, I think I was being more daring with my diet. The week before my flare I ate my favorite summer dish twice - spinach salad with strawberries and feta. I wonder if that did me in. I sure hope things calm down before the baptism, too. I fear I am going to have to hand my goddaughter off to her godfather and run off the alter in a mad dash for the bathroom!

 

[Goldfish]

Will be thinking of you Jill. At least you have some thoughts on what may have caused the flare. It's a nightmare that we have to tempt fate by eating something that may cause a flare just to find out that it does cause a flare. That's a bit of a roller coaster in itself! I feel so good now that I too am getting a little careless. Hard not to thought when you do feel so good. Good luck :goodluck:

 

[Cat-a-Tonic]

Count me in as another one who has been feeling good and getting careless with diet - I had salad THREE times last week! Eek, I shouldn't live dangerously like that! Salad usually doesn't cause me trouble, as long as I don't have it super often. I've been feeling a bit "off" today and I wonder if my salad binge is to blame. It may be time to start a new club - Salad addicts anonymous!

 

[Goldfish]

Oh no :eek2: Cat I hope you feel better. "Step away from the salad!"

 

[xJillx]

It's so hard to avoid the fruits and vegetables this time of year. My vegetable garden is out of control, and I can't enjoy it at all. :frown:

A little update of this oddity of a flare -

Yesterday I only went to the bathroom three times with little mucus and blood, and it was a bit more formed. Today, I had a pretty formed/large BM, but there was a good deal of blood on the TP. However, I didn't really see any in the toilet/on stool. I just can't figure it out. One step forward, two steps back. *Sigh*

 

[Astra]

Aw Jill that sucks!
You've been doing so well too.
Hope it settles down for you, if not, maybe see your doc, the bleeding could do with a bit of Scooby Dooin! Get it investigated soon.
Take care
xxx

 

[xJillx]

Aw Jill that sucks!
You've been doing so well too.
Hope it settles down for you, if not, maybe see your doc, the bleeding could do with a bit of Scooby Dooin! Get it investigated soon.
Take care
xxx

Thanks, Joan. I did have a flex sig last Tuesday when this all started that didn't show too much and biopsies said: "acute colitis". But I do have a full colonoscopy set up for September 22nd to see the complete picture.

 

[archie]

I have rollercoaster days some good some bad and so far I can't really work out the link, it's like a big puzzle. I know the last time I had chilli I was bad the next day but the time before I was ok. Alcohol in excess is a definate cause but i'm not quite willing to cut that out yet!!!

I've had blood now for about 3 months maybe longer on and off more on than off varying from very little to quite a lot, generally bright red occasionally a shade darker and worse on the bad days. There really isn't a pattern although after a bout of bad days I feel good again due to the clear out and on that note I have felt fab since the colonoscopy last week with lots of energy, it did show up a few ulcers at the surgery site and I forgot to ask where the bleeding was coming from but I was drugged up to the eyeballs after!!! Will ask lots of questions at review in a month.

Anyway I hope you feel better soon but like Joan said go and get the bleeding checked there is no point in delaying.