Seeking Input: Experiences of Crohn's Flare with an Ostomy

Hi... Can anyone with an ileostomy tell me what they feel like when their Crohn's flares?

I'm going to take a stab at this one, but two quick words of disclaimer... 1) I'm still figuring my ileo out. Got it the end of September and it is just now becoming "predictable" (if you can ever really say that). 2) I have had Crohn's for 20+ years, the last 10 with no real drugs or apparent pain trouble... but my colon would have told a different story. Have the ostomy due to multiple stricture sites and the whole colon being badly diseased. (Why didn't I know?)

I used to guess my body was acting up when there was a marked increase in activity of the colon. I am guessing that holds true for my ostomy. If I am not putting strange or troublesome foods into my body, if I begin to be overly active, perhaps my body is telling me something.

I also (very occasionally) had tell-tale cramps and noises (due to the strictures mostly)... these also seem to reappear when the disease is becoming more active. At least in me.

When I had a colon, and when the disease started to act up, I noticed I always felt like I'd been hit by a truck. Harder to figure that one out now that sleep is broken up by always going to the bathroom... but I can still monitor energy levels. If I am extremely low, something else in my body is using my reserves.

If I add all this up together, I have a pretty good indication that my Crohn's is at work again. Docs usually verify with blood tests...

Others may have better, or different, experiences.

Katman

Thanks for the reply. "Hit by a truck" is exactly how I have been describing myself the last few days. Wednesday night I thought for sure I was going to end up in the ER with an obstruction. Very loud and gurgly. I hurt both inside and out. It felt like I had been kicked in the stomach. (Ex-martial artist, so I do know how that feels.) Last week my whole body felt swollen. My knees especially. This is really my first bad flare since I got my ileo in Apr'09. I'm on Hurima injections weekly. Thanks again...

Let me try to put my feelings at this moment into words. I feel like I am in labor and ready to give birth. I feel cramps and very tired. The pain is like a stabbing one and I can actually feel the food trying its best to squeeze through the eye of a needle. My output is very foamy so my bag fills quite fast. I have had not one but 2 "blowouts" today alone. I tried to get some sleep but the pain keeps waking me up. I do my best to control the pain with deep breathing and that helps. To me, it seems the pain medication has stopped working or the pain is so intense that the dose I am on needs to be upped, and that is what the doctor did today, upped my pain patch to 10mg. He also mentioned I most likely won't be going back to work on Tuesday like I had hoped. I don't want to get out of bed, I just want to curl up in a ball and die. Someone kill me now...

Does that make sense? That's how this flare is feeling to me right now...but everyone is different...

Sorry, I have no idea, but I am actually interested. I did think buds sounded like me way before I had my ileo even done. Why so many dramas with having these pouches? It's weird. Go to the hospital, both of you, nowwwwwwwwwwwww. Cheers, mare up the medication. No patches, all the way up ....

Budd,
Is there a difference between what is Crohn's and what is scar tissue/obstruction? I am curious for my own education... At what point do I blame the side effects of surgery, and at what point is it directly due to my underlying Crohn's.

I also have to admit that my experience with Crohn's is quite tame compared to many, so... I'm not a good test marker for anyone.

Katman

Hi there,
I might be able to answer your question based on my own experience with Crohn's. Now for me, I had a fibrotic stricture (scar tissue build-up) and the pain from that almost always happened an hour or so after I ate something.
The pain was always in the same place and it was a constant pain, plus I could see the bulge in my right side where the stricture was due to the swelling.
My Crohn's flare was a different type of pain, and it would start in the center of my abdomen and spread down and to the sides of my abdomen. The pain was more intense, and it would come and go kinda like labor pains. Very sharp pain, and my knees would hurt as well.
When I would get the double whammy of a Crohn's flare plus the stricture, it was time to go to the E.R. and spend a few days at the hospital getting pumped full of steroids and Flagyl.
As far as post-op scar tissue, I will have to get back to you on that one. I'm in the hospital right now recovering from surgery. I spent six hours in the O.R. to get 5 feet of my colon removed, which included the stricture, to untwist many loops of colon that were attached to each other by fistulas. I have an ostomy now, and I'm cool with that. I hope this helps you out... take care, Dental Guy 44.

I felt very tired and extremely unwell, all the obvious things that you would expect really. Feeling ill is a very hard thing to describe and I try to avoid it at all costs. Hope you don't flare up often but if you do, stay positive because it only lasts for a little while.

In reference to your question, if it flares up, it feels like stomach cramps. Since I've been taking Pentasa, I have not had any flare-up.