Crohn's Disease & Ulcerative Colitis Support Group

Crohn's disease is a systemic inflammatory bowel disease (IBD) of unknown cause, that results in chronic inflammation of the intestinal tract. It can affect the entire gastrointestinal tract from mouth to anus, and can also cause complications outside of the gastrointestinal tract. There is no known medical or surgical cure for Crohn's disease, but there are many medical...

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Change?

firefly709
firefly709
This may have been asked before or talked about before (hell, I might have posted about this long ago and I don't remember)!

Has anyone noticed their UC or crohn's change over time?
I have been sick for 11 years and I've noticed that when I have flares now they are different than when I had them before.

Before, the pain was the worst part for me. I would be doubled over and lying down all over the place. And I, of course, had the frequent trips to the bathroom and sometimes all I would experience was bleeding.

These days, I still experience some pain. But more often than not, I am experiencing urgency. I am still having the same amount of bleeding and the same amount of bathroom breaks. But it seems like the urgency is taking over the pain that I feel like I should be feeling. In fact, I can't remember one time in the past couple of months that I had to lie down because the pain was so bad.
I'm not complaining! Because I am perfectly happy with less pain. My fear is the day that I can't make it to a bathroom on time because it hits me so fast.
rmb
rmb
Yes, for sure! In the early days of my UC it was the explosive diarrhea all the time and very little pain. I'm in remission now but with my last flare there was no diarrhea at all; I'm generally constipated for the most part regardless if I flare or not. Also with my last flare, I had a lot of abdominal pain.

In general though, it's the extraintestinal manifestations that have evolved and seem more prevalent the last few years, like arthritis and blood clots even when in remission.
Levi219
Levi219
During my first flare all I experienced was constipation mixed with urgency, during which all I that was passed was mucus. I had no pain issues. My second flare I experienced cramping and blood. All of my subsequent 5 flares were like this, except for my last flare. It started as a stomach virus which woke my UC up. I had bouts of vomiting, and explosive diareah with no blood until the fourth week. By then I had lost 40lbs and it was time for the hospital. I was still deadfast in my thinking that it was just the flu. (There was a mean flu going around that was hospitalizing robust healthy people up to a month.) I was badly mistaken.

I know now that flares can have varied symptoms. I won't make this mistake ever again.
Levi219
Levi219
My one sentence should have said I was steadfast in my thinking it was the flu. (Not deadfast)

I would have been "dead fast" if I wasn't hospitalized.
lol

I need a new proof reader. ;-)
deleted_user
deleted_user
Once when starting a new job I went without sulfasalazine due to no money for doc. I started flaring badly and caught a nasty strain of norovirus (we used to call it stomach flu) that was destroying healthy young bucks. That was loads of fun! I never fully recovered.
We need to remember that any illness that trips our immune system can trigger a flare.
bart4u
bart4u
My Crohns symptoms have changed over the years. A lot depends on the scaring damage, if you had prior operations and if you adhesions or fistulas. The symptoms could be different due to the medications you are taking too plus if you are in remission that could create less symptoms. There are many factors involved.
JeanCarlin
JeanCarlin
Urgency has always been an issue with a flare for me. It is the worst feeling in the world not knowing if you are going to make it in time or . I always carry a clean pair of underwear and wear pads just in case I start leaking. I've even worn diapers when really bad, but that's always a last resort. Even after 5 years and with all the meds I am on I have never been constipated always go the other way. I still go at least 4 to 5 times a day and i'm on Lialda and the Humira shots.
Good luck to you and always be prepared!!!
firefly709
firefly709
Thank you all so much for your replies. And Rachelle (rmb), I may have said this in the past, but thank you so much! You are almost always the first person to reply and you always have something helpful to say. I always know that when I post something here that you will always be there to say something. So thank you, very much! You have no idea how appreciated you are here. =)

And to everyone else, thank you as well. It's always nice to know (and unfortunate to know) that I'm not the only one going through these things. And that it isn't something that I need to worry about too much.

I saw my doctor yesterday and he decided that I needed to switch my medication. He told me the same thing in January but I wasn't comfortable with any of my options. But I have been in a constant flare for over a year now and I know that I can't do it for much longer. So I will be starting Remicade in the coming month. Just waiting to hear from the nurse that will be helping me through all of it.
Rachel59
Rachel59
Yes, mine have changed.
At first mine (crohns) was swollen tummy after any meal at all. Not horrible pain but constipation then diarrhea back and forth.

Then came the horrid pain later w/ vomiting and diarrhea about a year in. Fast forward to 2 years from dx...I had terminal ileum removed and an ostomy. After ostomy takedown 6 months ago. I can't get 10 feet from a bathroom. Diarrhea and urgency so bad, that I am afraid to leave home. Humira seemed to help, but I developed antibodies. So, now trying Cimzia.
Also, Questran for the diarrhea. So, yes, mine has changed. Also having a lot of pain from the arthritis and so tired all the time.
STILL having the tummy going from flat to looking 8 months pregnant in a matter of hours. These IBD diseases are really weird!

I think they play mind games with us. xo Rach
gustokitty
gustokitty
firefly. yes, i have had many versions of flares in my 14 years. and unfortunately i have had those days you fear. try colostrum. i don't want to mention a brand name and be accused of selling something, cuz i'm not. i'd hv to look at my bottle. it was prescribed by my acupuncturist. i kept in remission for a few months, but did have flare, and am working on getting back in remission without prednisone for the first time in my life. it's been about a month, and i have almost taken the prednisone , but i want to know if it can be done.
gustokitty
gustokitty
ps. like buck i have had the rotovirus. i started to tell u, but got off negative on how lazy my gi docs are. soooo i actually had it for about 9months. even though they still say that;s "impossible", even thought, they FINALLY did the blood test i asked for and it showed up over 9months, well did, didn't did. But they also said that reinfecting myself for 9 months was impossible. i often wonder what planet they are from.
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