Stupid (?) Newbie question

Crohn's Disease Forum

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Forgive my ignorance as I'm newly diagnosed and the Crohn's was found by accident. I keep reading about "flare ups" or "flare," some where people end up hospitalized or homebound or what have you. Can someone please explain to me what that means? I mean, I know what a disease flareup is, it's a time where it's particularly active but what exactly happens. Well, maybe not exactly, as I know everyone is probably different, but in a general sense.:sign0085::confused:

I know, that sounds incredibly dumb but I really want to know.

Thank you!

Suzanne
 
There are no dumb questions, Suzanne! Especially when you are new to the disease. My flares always mean, more diarreha, more pain in my tummy, more fatigue than normal. Possibly sick at my stomach as well. But yes, you are correct in that symptoms can be different in each of us, these are pretty standard.
 
So, I have "D" pretty much every day, a couple of times in the morning usually and that's all. My biggest problems are bloating and horribly painful gas bubbles, though if I don't eat dairy, they're not as bad. And I have, not all the time but often enough, a sense of urgency. One minute, I'm fine and the next it's I have to find a bathroom, NOW! And even more rarely, I have stomach cramping that is painful to the point I feel nauseous. That doesn't happen often (thankfully).

Would those be considered "flares?" I'm just trying to get a sense of what is "normal" in Crohn's that I shouldn't be too concerned about, and what is something I should be more concerned about.

This is altogether a very confusing disease :soledance:
 
Well, I forgot the weight loss that usually happens in a flare. And yes, it is confusing. If you are having more D than you normally do, you could be, along with some or all of the others. Sometimes I didn't know until the doctor told me, he'd run a blood test and see if my white count was up, if it was, he would normally schedule a scope to check for a flare.
 
I have never had any weight loss, and not to make light of that, but that is something that wouldn't be unwelcome for me haha

I'm on daily chemo which keeps my white blood cells in check (I have leukemia) so I don't know if a blood test would show anything. I rarely vary in my wbc. A scope? What is that? I've had (in order of appearance) a CT scan of my abdomen (which is how the Crohn's was first suspected though they were actually checking my spleen), a colonoscopy, an endoscopy and a small bowel series. Is a scope the endoscopy? Or is it a test I just haven't had done yet?

Thank you, btw, for answering all my questions. It is very much appreciated!
 
I was referring to colonoscopy, lol, sorry, sure "scope" could apply to both of those. Now, understand that I was diagnosed 24 years ago, so I am certain things may have changed by now, but my GI told me the only way to know for sure it's Crohn's is to have the colonoscopy done and a biopsy of the tissue where the inflammation is. And true, the wbc numbers would probably not be a good indicator for you, what with the chemo and all.
You are more than welcome, Suz, no need to thank me. Love this forum, we can all help each other. Have you seen a GI? And do they have you on any meds for the suspected Crohn's?
 
Ok, yes, I had a colonoscopy and they biopsied 4 different sites and it all came back Crohn's.

Short version, my oncologist sent me to have the CT scan as I'd been having some trouble with being short of breath. When you have leukemia, your spleen can enlarge and push on your lungs, hence the CT scan. The radiologist noticed that my terminal ileum was enlarged so my onc sent me to a GI, who ran all the other tests. I can't stand him, so I have an appointment next week with another GI doctor, who specializes in Crohn's. As of right now, I'm not on any treatment. I've had these issues for about 13 years and I figured a few more weeks wouldn't kill me (though the 1st GI pretty much had me at death's door). All these years, we thought it was my chemo doing the number on my tummy. And since in all these years the problem has remained relatively stable, I'm not concerned with waiting. And, I figure if I was at death's door (as idiot doctor number 1 was implying) then I wouldn't be working, raising a teenage son alone, traveling, exercising, socializing, etc etc etc He wasn't particularly thrilled when I asked him questions, he wanted to give me the information he wanted to give me and that was that. Which is why I'm in the process of finding someone new :)
 
Well I wish I could send you to my first GI, he is my fav, but he left Missouri for GA. Think he is in Decatur. He was excellent at communicating and answering my questions
 
Hello Suz, sounds like you've been through a lot. I ask many quEstions on here, and it helps so much when people share their advice and experiences, so dont apologize for asking.
I agree, that in a flare, more D, more urgency, more irregular bouts of pain, and deff more fatigue. Usually inflimation markers are high, then you may be put on prednisone if other medication isn't controlling the crohns. The prednisone may bring inflammation under control (temporarily in most but Iv read here it actually puts some people in remmission), but it has many side effects, and can make other 'flare' symptoms worse. Fatigue being most common on here, but for me its like i can't cope with it physically after many years of Pred, and it puts other things out of balance.

Inflamation under control, many might not feel their then 'flating' but when my crohns symptoms are more full on, even on Pred, I still say 'my crohns is flaring today'. Just because it feels worse in some way. But then Iv never been in full remmission, except a very short period, and some say on here, while crohnsxis active, your in a flare. Well in that case, we're all in one big constant flare, so instead, for me it's the 'worst' of times with crohns that I consider flaring.
Best wishes, and ask as many questions as you like. I wish I found this forum earlier when I could of trialed diff meds and diets, but better late then never. So I plan to ask, even if little symptoms, because the people on this forum all live with ibd, and have similar experiences, and any advice I can gain for future reference, and well being, wether supplements or medications, could potentially be really beneficial for my crohns. So ask away.
Beat of luck with everything xoxo
 
Hi Suzi. I echo what Lynn said. There are no stupid questions. Your treatment might vary from the standard, because of your chemo and lukemia, as many treatments weaken your immune system and that might not be the best for you. I hope your new GI is able to coordinate with your other doctors and she is more helpful than the first GI.
 
Thank you, LindaS and Irene3, for your help. I'm beginning to discover that this disease just runs the gamut of symptoms from person to person and there really is no "normal," haha

Wishing us all happy days,
Suzanne
 
Keep me posted on how it goes

Hi! Saw my new doctor today and just loved her, would've hugged her if I thought it in any way appropriate! She brought up my concerns over medications and validated them even before I had a chance to. She also said she didn't think that my Crohn's was as severe as doc #1 made it out, actually feels that it's mild to moderate and that while my ileum is definitely very inflamed, as it hasn't gotten worse over the years and while I am definitely high-functioning, that it's probably relatively stable. Surgery is off the table, for the time being anyway. She put me on entecort, which I'll start next week when I return from my mini-vacation. I'll go in for another colonoscopy in 3 months to see if the entecort is helping. If not, she said there are other things we can try before going on to more drastic (for me anyway) medications.

I came out of there feeling pretty darn good about all of this, and definitely more comfortable that I have a partner in my doctor.

Peace and joy!

Suzanne :rosette1::applause::panda-wave-t::banana::headbang:


Oh, I do love the emoticons on here lol
 
OH, I am soooo glad to hear that, hon! You are going to be fine, I know it! Enjoy your mini va-cay! I made it 6 years past when they thought I would more than likely need surgery in that same area, you can too with a good doc to help you! Hugs!! (I love the emoticons too! ):ytongue: ;):ghug::applause:
 
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