What does Crohn's Disease feel like

[KDH-3*3]

How did you feel, leading up to being diagnosed with Crohn's Disease?

I remember around the summer of 2009, that going to the bathroom was a real challenge. I had to carry around wipes with me. I was in pain/discomfort in my stomach, lower right. The family doctor thought I had hemroids (not sure if that's spelled right) and I guess I did. I was treated for that and sent on my way. About the last of september, early part of november I started losing energy and wanting to sleep the whole day away! Not like me... Then one saturday I passed out...went to the ER and they couldn't find anything at the time...they referred me to a specialist the next day...I went in, talked, did tests, went on my way. Went back, did more tests...more and then was diagnosed and told I needed surgery, which was last part of november and early december.
I hope this makes sense.

 

[ameslouise]

I originally was dx with Ulcerative Colitis. After I had my colon removed I thought I was cured. I had six glorious years. Then I started having what I thought were unconnected symptoms - canker sores, joint pain, excrutiating fatigue. Now I know these are common harbingers of a Crohn's flare. This went on for about four months, then suddenly stopped, and that's when the GI problems started which eventually led to my being re-dx with Crohn's.

If I had known then what I know now about those symptoms being Crohn's related, I could have nipped this in the bud much earlier and I might not be facing surgery right now...

- Amy

 

[MADiMarc]

I did not have an "ah-ha" moment signifying something was wrong. I had what thought was normal bathroom issues from time to time. Then, I turned 19 and bam! I lost major weight, could not eat without throwing up and had horrible pain just about all over.
What a way to say good bye to your teens!
Michele

 

[Shannon]

Much like yours' KDH! Discomfort for seven months, very irregular, daily mucousal diarrhea, constipation, lower right pain, and in August - I couldn't move from the couch even after fifteen hour naps. Finally, blood in the toilet got me rushed to the ER, where a scope was done and confirmed that something WAS wrong - and I *officially* began my dance with Crohn's. Although like us all, in retrospect, it's been a longterm relationship with this disease for me...

 

[Rebecca85]

For about a year I became very tired, and came down with every bug going (colds, tummy bugs, throat infection, etc). Then I got a really bad sore throat (2 weeks of being unable to eat!). When I finally could eat again, I got incredible stomach pains and threw up a lot. After a week it got to the point where all I could do was curl up on the floor moaning, and my boyfriend took me to hospital. It only took 2 weeks for them to find the Crohn's, after an abdominal ultrasound and CT scan (and a later colonoscopy to confirm).

I didn't have any real bathroom issues until after diagnosis! (possibly because before then I thought I was lactose intolerant, so the odd bout of diarrhoea I put down to that).

 

[slightlysilly]

I had some pain in Aug of 2001, had a hernia repaired (supposedly), felt ok or so I thought, in Oct 2010, I went to the ER for an alleged kidney stone, and the follow up tests is what got me diagnosed. But I wasn't in horrible shape before diagnosis... im in bad shape now... im just glad I don't have to run around wondering what's wrong with me.. that would completely suck.

 

[chrisnsteph1022]

I know the exact day mine started. It was very sudden. Valentine's Day, 2003. I thought it was a stomach bug (pain, diarrhea). After a week or two, I called the doc, knowing a stomach bug shouldn't last that long. He did the regular blood tests and thought I had an intestinal infection. We did stool samples, which showed no parasites. He did a rectal digital exam (most painful experience ever) and said I had hemorrhoids.

In the meantime, I posted on a weight loss message board (I was trying to lose weight) in the off topic area, discussing my problems. Someone mentioned Crohn's, which I had never even heard of. I researched and brought it up to my doc. This was about 6 weeks after the symptoms started. He agreed it was possible and referred me to a GI. One scope later and I had a firm diagnosis of classic Crohn's. Compared to most, my time from symptoms starting to diagnosis was very short (about 8-10 weeks).

 

[Ian]

I started passing blood with my stool, which went from solid to frequent D in a matter of weeks. After a couple of months of changing my diet etc and not seeing any improvement I went to my doctor. I was told it could be constipation (with watery stool managing to get past the blockage) and hemmies (I knew it wasn't but went through the motions anyway - a week of Fibogel and hemmie cream). Went back a week later, had a finger up the bum, and my doc guessed colitis. Saw a GI a couple of months later, had a flexi-sig and was told I had proctitis. Pretty quick compared to most!

My dx has since changed to distal colitis and then to crohn's colitis - but essentially I was diagnosed with IBD in some form from a rectal exam by my GP. I feel very lucky, some of the stories I read about people suffering for years without a diagnosis really upset me.

 

[KDH-3*3]

Is it ok to say wow?! I mean my goodness, I wish there was a way to catch signs of this long before anything major started happening/changing though, you know? Maybe by everyone coming out with their information, it might help scientists/doctors to figure something out and take it from there! You never know. What I don't get is that Crohns doesn't run in the family, so how did I come across it?

 

[PeninsulaLil]

I originally had a microscopic colitis diagnosis, flares were controlled with asacol for almost 9 years. But I never was told to stay on it as a maintenance drug. Finally went through an 18 month period of off and on D and urgency. Then fatigue, random high fevers, dehydration, weight loss and cold sores. GP sent me to GI who did an unmedicated sigmoidoscopy the first day I saw him and diagnosed Crohn's or UC immediately. Colonoscopy and tests later confirmed Crohn's.

Lilly

 

[slightlysilly]

KDH - no one in my family has it either, and my numbers on the promethus serum were so high the GI asked who in my family has it. I said no one...he was surprised.

 

[Becky]

For about 10 yrs I thought I had IBS. Basically lots of D but not pain. Then it happened really fast. Just started getting a lot of pain lower right side. I couldnt eat. Finally was diag. with gallstones and had my gallbladder out. I never got better and about 2 wks later I was in hospital and thats when they thought it was crohns.

 

[Helping Evan]

Is it typical to have so much pain with Crohn's?? My son is hurting all the time. He's still being dx but first colonoscopy showed possible crohn's. No meds yet, but anyone had any success with meds that take the cramping and sharp pains away?
Thank you

 

[Helping Evan]

guess no one wants to answer.....

 

[Farmwife]

My girl takes hyoscyamine for cramping. It does help a bit.
She lives on her heading pad for the most part it does help. Plus kisses from mommy but she's five.:kiss:

Also stay away from NSAID's like ibuprofen. They can cause problems like cramping for an IBD'er.