Does this sound like crohn's disease? Anyone start with really mild symptoms?

Hi everyone,

I am a bit perplexed, and could use some advice / input...

How it started:
About 3 months ago I had a heavy feeling below my belly button & I got really fatigued for 3 days which isn't normal for me. I went to the doctor and she thought my appendix was about to explode, they did a CT scan and said that part of my small intestine was inflamed. They said it could be bacterial or a small infection and that as long as it felt better within a few days it was fine, and if not to let them know.

Then:
It got better, but I still felt a little more gassy & bloated than normal, but no other symptoms. About a month later it happened again for about 3 days where I got really tired and didn't feel great (I was traveling so couldn't look at it right away). And then I was good for about a month, and then it came back and hurt again, this time a bit worse than before. I went in for more tests. They did a load of blood work and another CT scan, and saw the same area was inflamed. The blood work all returned 100% normal for everything, and the blood work to check for IBD returned negative. I switched to an IBS diet for a few weeks and the bloated feeling went away, and after about 2 weeks I was back to eating normally.

Surgery & Biopsy:
The doctor recommended laparoscopic surgery to get a chunk of it so we could see what it was definitively and remove the inflamed part, as they were worried it might be cancer and generally seemed to have no clue. I did the surgery about a week ago and the surgeon removed about 11 inches of my small intestine that was inflamed he said. It was not near my ileum and the rest looked fine he said. The pathology report is waiting for me at his office to grab tomorrow, and they said it look's like crohn's.

I am 33, never had any issues before. I didn't have really any diarrhea during the lead up to all of this, and I only had it for about 10 days when I started taking probiotics just to increase gut health.

Has anyone started their Crohn's diagnoses like this?

Can anyone share a similar story?

I read through the stories and everyone's cases seemed very severe, is that going to happen eventually or do some people just have a very mild case? Anyone heard of anything like this that could also cause part of your small intestine to decide to be inflamed ?

Thanks for the help!

If you've been reading around like I have, you'll notice no two cases are exactly alike for the most part. Your case sounds somewhat alike to mine as it really started to come to the forefront at 37. But I have had "stomach" issues on and off since I was a teen, even went in once and was told it was blockage and gastritis, was given those carbonated laxative drinks and sent on my way. Wasn't one for doctors in the first place and felt somewhat ashamed about even going in for such a thing, so never went in again even though I had episodes here and there over the years.

For whatever reason, it just got much worse and I didn't even have a clue there was any issue until I was in for something completely different.

All this talk about surgery on the boards is freaking me out to be honest.

Sounds like daughter presentation of for the most part Asymptomatic crohns disease.

Until 2 months before dx with Crohn's Disease when things went down hill very quickly.
She would have these periods of severe pain lasting about 24-48 hours. She only abnormal bloods was iron levels.

She has small bowel Crohn's disease.

Your story sounds just like my 14 year daughter. We brought her to ER and wE told it was her ileum that was inflamed but also told that usually it's Crohns so tomorrow we have an appt to see a GI. She has never had D but is always C. Brought her in once to be told it's just constipation....severely. So I was very surprised this ER visit to be told something different. Now Her blood work just shows low iron and fighting infection somewhere. About year back she was bleeding into potty but was put off then too by Dr.

tlabruyere said:

Your story sounds just like my 14 year daughter. We brought her to ER and wE told it was her ileum that was inflamed but also told that usually it's Crohns so tomorrow we have an appt to see a GI. She has never had D but is always C. Brought her in once to be told it's just constipation....severely. So I was very surprised this ER visit to be told something different. Now Her blood work just shows low iron and fighting infection somewhere. About year back she was bleeding into potty but was put off then too by Dr.

Click to expand...

Just a few years ago anything of the like was put off. The doctors have become much more aware now. My primary was pissed they hadn't tested me and done more to look into it.

juggys69 said:

If you've been reading around like I have, you'll notice no two cases are exactly alike for the most part. Your case sounds somewhat alike to mine as it really started to come to the forefront at 37. But I have had "stomach" issues on and off since I was a teen, even went in once and was told it was blockage and gastritis, was given those carbonated laxative drinks and sent on my way. Wasn't one for doctors in the first place and felt somewhat ashamed about even going in for such a thing, so never went in again even though I had episodes here and there over the years.

For whatever reason, it just got much worse and I didn't even have a clue there was any issue until I was in for something completely different.

All this talk about surgery on the boards is freaking me out to be honest.

Click to expand...

Ya but what is frustrating is I can't' find any stories that start anywhere near mine, I've never had any stomach troubles, never any problems with bowel movements my entire life until this year.

Every story I read seems so severe,
Thanks!

Catherine said:

Sounds like daughter presentation of for the most part Asymptomatic crohns disease.

Until 2 months before dx with Crohn's Disease when things went down hill very quickly.
She would have these periods of severe pain lasting about 24-48 hours. She only abnormal bloods was iron levels.

She has small bowel Crohn's disease.

Click to expand...

Thanks Catherine, I am sorry to hear that! How old was she when that started? After it started did it just keep ramping up in severity? Have you had any luck in getting it under control?

Is "small bowel crohn's" different than cronhn's?

Thanks!

green212 said:

Is "small bowel crohn's" different than cronhn's?

Thanks!

Click to expand...

www.webmd.com/ibd-crohns-disease/crohns-disease/5-types-crohns-disease

juggys69 said:

www.webmd.com/ibd-crohns-disease/crohns-disease/5-types-crohns-disease

Click to expand...

Yep I know those 5, but they all seem to affect the small intestine?

green212 said:

Yep I know those 5, but they all seem to affect the small intestine?

Click to expand...

No, if you read them, its the whole dietary tract, including stomach. There are cases on these boards that have every area effected. You can even look up some "nice" charts.

There are even rare cases that cause gangrene to external body parts, I haven't read any of those on these boards yet, am glad it looks extremely nasty.

juggys69 said:

No, if you read them, its the whole dietary tract, including stomach. There are cases on these boards that have every area effected. You can even look up some "nice" charts.

There are even rare cases that cause gangrene to external body parts, I haven't read any of those on these boards yet, am glad it looks extremely nasty.

Click to expand...

Ya I am aware, I was asking why she specified "small bowel crohn's" as that seemed to indicate a type I hadn't heard of before, when in fact she just meant crohn's it looks like.

I am not sure why it is helpful to post about gangrene in this situation?

but thanks anyway...

Sorry green212

The common name for my daughter Crohn's is Ileocolitis. Her disease is currently confined to a 10 cm area about 20cm above where a colonscopy can reach.

I'm at work so don't have much time. I have attached a copy of the thread about our road to dx. Low iron was first dx about 12 years, she was dx at 16.5. She is currently has active disease as per faecal calprotection testing.

http://www.crohnsforum.com/showthread.php?t=60021

green212 said:

I am not sure why it is helpful to post about gangrene in this situation?

Click to expand...

I just added that because as you said you'be been looking around and seen some horror stories, I was just saying there are even worse ones, and thankfully, I haven't run across any of those here.

Thats all I meant by it, sorry if it thew you off.

Maybe it's a matter of perspective, because in reading your story I thought that having 11 inches of intestine removed did in fact sound pretty severe.

Our daughter didn't have many symptoms prior to diagnosis. She was tired, low iron levels, and had a small amount of blood in her stools. They thought she was constipated.

It was about 6 months from first symptoms to colonoscopy, etc and diagnosis. In her case the Crohn's was labelled moderate to severe.

Well, they were doing a biopsy as they thought it was cancer, and told me while they were in there they might as well remove anything that is inflamed. Is that not normal?

Thanks everyone!

green212 said:

Well, they were doing a biopsy as they thought it was cancer, and told me while they were in there they might as well remove anything that is inflamed. Is that not normal?

Thanks everyone!

Click to expand...

Removing something before they know whats going on ? And in a case where you've never had issues before ? Yes, its a tad abnormal.

juggys69 said:

Removing something before they know whats going on ? And in a case where you've never had issues before ? Yes, its a tad abnormal.

Click to expand...

Well they knew it was inflamed , so i think they were like, "while we are in here grabbing a piece might as well remove the part that is unhappy anyway"

DustyKat DD was dx on the operating table.

It really depends on your situation. One of the issues with Crohn's disease is that the disease has a fairly high recurrence rate at the surgical site. This rate varies by the location of the CD/surgery site in the bowels somewhat.

Also, with CD it isn't rare with small bowel disease not to have the tell-tale D and bloody bms. My son's was dx'ed with CD at ileocecal valve in the terminal ileum and though he had active disease his only outward sigh for some time has been failure to gain weight(common when disease is located in that area). My son did have other symptoms at the time of dx, though.

He has recently had surgery since the meds were unable to get him into remission. The tricky part with small bowel disease is you can only remove so much small bowel whereas you can live without your colon. So a lot of times, disease severity and progression, age and risk of further resections of the small bowel are taken into consideration since surgery cannot cure CD.

I would make a list of question and concerns you have and go over them with your GI.

I just find it odd that they did a pre emptive without knowing what it was on a person that had no history. He said they went in for a biop to check for cancer and then remove the inflamed part without knowing what it was at all.

With no past history of issues. If it turns out he would have needed it done, great pre emp I guess. When I had GPA, my primary had to sneak me on stuff to see if it would work, and come up with a reason just for my barium test because GPA doesn't cover specialists or most tests. Now I have medicaid, my new primary ( I lost my transportation so had to switch ) won't authorize specialists or testing until she gets my file from my last primary, even though she has access to all my hospital history, she only went through on the Urologist because the ER report I had in my hand said to send me to one. He is the one sending me to a GI now, I just find the way doctors views swing so 180 degree odd at best.

Granted, I think my new primary is a twit, didn't even schedule a follow up appointment on a new patient, which is the normal thing to do, and I'm already looking for another in my area, I just think his was perhaps a little to gung ho. I miss my old primary, now that I actually have the coverage to do all the things she wanted done in the first place, but she would have wanted to know exactly what she was dealing with before any surgery. She says surgery is the last option, not the first. This is with knowing I have a surgery looming down the road for another issue, I have to decide on.

Like I said, I just find it odd. I've seen all the cases with surgery on the boards, but they all mostly really had a history, and just as my primary said, it was pretty much the last option. No one else finds his doctor, without knowing what was what and going ahead, on a patient with no history odd ? Like I said, if it turns out it was a great Pre emp, God bless, I just find it odd. His story with surgery actually scares me more than others where it was life threatening, if you understand what I mean.