No diagnosis-focal active ileitis

[Badbelly2012]

Hi, I am a 20 year old female who has struggled with diarrhea and stomach pain for as long as I can remember. I have treated it with a very clean diet since my GI Doctor can't find anything visibly wrong. I do have gastroparesis. I have recently lost 15 pounds that I didn't have to lose and did a repeat colonoscopy which showed reactive gastropathy in my stomach in focally active ileitis. Everything appeared normal on the colonoscopy except for the abnormalities in the biopsies. My GI Doctor just keeps talking about stress, but I am not stressed and stress does not cause ileitis. Does anyone have any advice? Could this be early IBD or something? I'm sick of not having energy and having so much stomach pain/diarrhea.

 

[ronroush7]

It very likely is but make sure you get the actual word from your doctor.

 

[fuzzy butterfly]

Hi bad belly. I am sorry to hear your story. Can I ask what the abnormalities were on your biopsy. I feel that it could be ibd but you really need to be sure. I would recommend that you see the doctor again and try to find out what is actually going on. Ask for more tests and information as you need to know what is going on asap. Best wishes to

 

[Badbelly2012]

Hi bad belly. I am sorry to hear your story. Can I ask what the abnormalities were on your biopsy. I feel that it could be ibd but you really need to be sure. I would recommend that you see the doctor again and try to find out what is actually going on. Ask for more tests and information as you need to know what is going on asap. Best wishes to

The biopsy says focally active ileitis. No evidence of granulomas. Findings consistent with early IBD vs resolving injury/infection. My doctor completely ignores this and just talks about stress.

 

[fuzzy butterfly]

My goodness hun. I'm afraid it might be time to go in kicking n screaming as it were. Don't ask them for help tell them you want help n now, as you can not go on like this anymore. Be firm but polite and don't be fobbed off. It is a shame that we have to be forceful at times, but when they won't listen what else can we do. Best wishes to you, hugs and support

 

[Badbelly2012]

My goodness hun. I'm afraid it might be time to go in kicking n screaming as it were. Don't ask them for help tell them you want help n now, as you can not go on like this anymore. Be firm but polite and don't be fobbed off. It is a shame that we have to be forceful at times, but when they won't listen what else can we do. Best wishes to you, hugs and support

Thank you so much Mandy. I appreciate your support.

 

[fuzzy butterfly]

Your most welcome love. I think the only thing that would stress you is their lack of help n support. Btw when you next seem him/her/them tell that...
take care :hug:

 

[DEmberton]

What Mandy said. Ileitis is obviously inflammation of the Ileum and that's the most common place you find Crohn's. 'chronic inflammation or resolving infection'is what my first colonoscopy report said.

 

[Badbelly2012]

What Mandy said. Ileitis is obviously inflammation of the Ileum and that's the most common place you find Crohn's. 'chronic inflammation or resolving infection'is what my first colonoscopy report said.

Wow, that's good to know. Did you have to wait a while before you were given an actual diagnosis? My doctor is just saying everything is stress and ibs.

 

[DEmberton]

Wow, that's good to know. Did you have to wait a while before you were given an actual diagnosis? My doctor is just saying everything is stress and ibs.

I had a CT scan and they diagnosed me after that. But I already had a stricture after 20 years of thinking it was IBS.

Is your doctor confusing IBS and IBD? IBS shouldn't cause weight-loss.

 

[Badbelly2012]

I had a CT scan and they diagnosed me after that. But I already had a stricture after 20 years of thinking it was IBS.

Is your doctor confusing IBS and IBD? IBS shouldn't cause weight-loss.

He understands ibs shouldn't cause weight loss but the CT was normal and so was the colonoscopy besides the ileitis on the biopsy. It's like he's completely ignoring the inflammation. Maybe it's really early stage or something but as far as I know, ibs doesn't cause inflammation.

 

[Eridon2002]

Is this a GI doctor? I would go find another doctor that specializes in IBD. I am a big believer of second opinions.

 

[Badbelly2012]

Is this a GI doctor? I would go find another doctor that specializes in IBD. I am a big believer of second opinions.

Yeah he is. He just doesn't give me the time of day and thinks everything is stress and ibs. He doesn't even give me solutions to try.

 

[Scipio]

Sounds like your GI is an IBS man. I second the notion that what you need is to find an IBD man.

IBD is a difficult and frustrating disease to manage, as so many of us on these boards can attest. Thus a few docs may sort of avoid treating it or wish they didn't have to. If you've got a doc that sees all diarrhea as IBS you need a new doc.

 

[Badbelly2012]

For him, I think he needs to see major inflammation with the scope to diagnose ibd or he calls it ibs. Whether it's early ibd or not, I don't know but I agree it would be best to get a second opinion.

 

[fuzzy butterfly]

Hi i also think its time to find a new Gi who specialises in Crohn's. Mine is the clinical lead of crohn's and is really great. Only trouble i have is getting to see him somtimes as he travels the world, on education/ research about crohns. Google crohns specialist in your area n see who crops up. Best wishes

 

[ronroush7]

He understands ibs shouldn't cause weight loss but the CT was normal and so was the colonoscopy besides the ileitis on the biopsy. It's like he's completely ignoring the inflammation. Maybe it's really early stage or something but as far as I know, ibs doesn't cause inflammation.

It is not completely clear to me the difference between IBD and IBS.

 

[Clash]

Badbelly2012, some GIs and pathologists are sticklers for being able to check the granulomas box on biopsy to dx Crohn's. This is a bit silly because different studies suggest anywhere from 50 to 90% of CD patients dont have granulomas found on biopsy.

Although granulomas strongly suggest Crohn's disease as the diagnosis, they are seen in only 10% of patients with Crohn's disease and are sporadically distributed in biopsy specimens.

Source

I think a second opinion or even a records review at a large IBD clinic would be good options.

ronroush7

Here is the difference between IBS and IBD

IBS does not produce the destructive inflammation found in IBD, so in many respects it is a less serious condition. It doesn't result in permanent harm to the intestines, intestinal bleeding, or the harmful complications often occurring with IBD. People with IBS are not at higher risk for colon cancer, nor are they more likely to develop IBD or other gastrointestinal diseases. IBS seldom requires hospitalization, and treatment does not usually involve surgery or powerful medications, such as steroids or immunosuppressives.

Source

 

[Lady Organic]

definitely seek a second opinion. best wishes.

 

[ronroush7]

definitely seek a second opinion. best wishes.

Agree

 

[Badbelly2012]

I will definitely make a new appointment. Thank you all

 

[fuzzy butterfly]

You are most welcome. Let us know how you get on. Take care n best wishes

 

[Scipio]

"It is not completely clear to me the difference between IBD and IBS."

Inflammatory bowel disease (IBD) is, as its name says, a disease characterized by an inflammation of the gut. The two main types, as we know, are Crohn's and ulcerative colitis. During active IBD the bowel will usually be visibly inflamed - red color, ulcers, bleeding, etc. Or if the inflammation is in the small bowel, as sometimes is the case in Crohn's, the inflammation can be detected by MRE, CT scan, etc.

Irritable Bowel Syndrome (IBS) is a functional disorder of the gut, not an inflammatory one. In IBS the gut looks perfectly healthy but the sufferer has symptoms anyway. IBS comes in three main types characterized by either diarrhea, constipation, or an alternating mixture of both. The treatments for IBD and IBS are fundamentally different. In IBD the causes are unknown so the main battle is to knock down the inflammation to control the disease. In IBS the main battle is to figure which of the many possibilities is causing the symptoms and treat that.

Unfortunately, it is quite possible to have IBD and IBS at the same time. In fact, since both usually produce a lot of diarrhea, that's one of the big questions on the minds of many GIs when a Crohn's patient has a symptom relapse: "Is this new diarrhea outbreak a Crohn's flare or this an overlay of IBS?"

Some other differences: IBS occurs far more frequently in women than it does in men, but IBD is close to 50:50.

 

[ronroush7]

"It is not completely clear to me the difference between IBD and IBS."

Inflammatory bowel disease (IBD) is, as its name says, a disease characterized by an inflammation of the gut. The two main types, as we know, are Crohn's and ulcerative colitis. During active IBD the bowel will usually be visibly inflamed - red color, ulcers, bleeding, etc. Or if the inflammation is in the small bowel, as sometimes is the case in Crohn's, the inflammation can be detected by MRE, CT scan, etc.

Irritable Bowel Syndrome (IBS) is a functional disorder of the gut, not an inflammatory one. In IBS the gut looks perfectly healthy but the sufferer has symptoms anyway. IBS comes in three main types characterized by either diarrhea, constipation, or an alternating mixture of both. The treatments for IBD and IBS are fundamentally different. In IBD the causes are unknown so the main battle is to knock down the inflammation to control the disease. In IBS the main battle is to figure which of the many possibilities is causing the symptoms and treat that.

Unfortunately, it is quite possible to have IBD and IBS at the same time. In fact, since both usually produce a lot of diarrhea, that's one of the big questions on the minds of many GIs when a Crohn's patient has a symptom relapse: "Is new diarrhea this a Crohn's flare or this an overlay of IBS?"

Some other differences: IBS occurs far more frequently in women than it does in men, but IBD is close to 50:50.

Thank you!!!!!!!!

 

[DEmberton]

IBS is medical speak for "we don't know". Probably most cases are undiagnosed something else: for me it was Crohn's; a lot are SIBO, a lot are food intolerance, and probably microscopic Colitis (i.e. inflammation that's too small to be seen without a biopsy) explains a lot too.

I was told it was to do with the muscles that surround the bowel not working as they should, caused by stress, and was prescribed Colafax to relax the muscles. It didn't help.

 

[Badbelly2012]

Hi all. I saw a new doctor who confirmed I have Crohn's of the ileum. I started new medicine and have an MRE coming up. Thanks for all the support.

 

[ronroush7]

Hi all. I saw a new doctor who confirmed I have Crohn's of the ileum. I started new medicine and have an MRE coming up. Thanks for all the support.

Keep us updated. Sending support.

 

[fuzzy butterfly]

Hi badbelly. At least you can now go forward and get treatment. Sorry you have crohns but with the right meds for you it is managable. Best wishes n hope you feel better very soon. We are here if you need us. Take care ..