I need some help really scared I may be misdiagnosis

[Blu's Tale]

Hi, I went to my dr in July as I was having uncontrollable bowel movement with very little blood. I had an colonoscopy on 6th Sept which showed inflammation and an ulcer in my ileum and my dr said that further mild inflammation was found from my biopsies. My gp advise me she thought it was IBD but not convinced it was Crohns and definitely not colitis so referred me to IBD consultant . Saw a consultant on Wednesday and he thinks I have IBS as I have very little to no mucus or blood, in the 3 months of suffering with severe pain and diarrhoea I have had a couple of bouts of constipation one was brought on by Imodium. My consultant said that ulcers are common in the ileum like you get on your tongue. I am so confussed and scared he my brush IBD off as IBS and don't know what to do

 

[ronroush7]

Keep pushing until you get some concrete answers. If you are not satisfied, get a second opinion.

 

[Blu's Tale]

Keep pushing until you get some concrete answers. If you are not satisfied, get a second opinion.

Thank you

 

[ronroush7]

You are welcome

 

[Scaryman]

Hi, I went to my dr in July as I was having uncontrollable bowel movement with very little blood. I had an colonoscopy on 6th Sept which showed inflammation and an ulcer in my ileum and my dr said that further mild inflammation was found from my biopsies. My gp advise me she thought it was IBD but not convinced it was Crohns and definitely not colitis so referred me to IBD consultant . Saw a consultant on Wednesday and he thinks I have IBS as I have very little to no mucus or blood, in the 3 months of suffering with severe pain and diarrhoea I have had a couple of bouts of constipation one was brought on by Imodium. My consultant said that ulcers are common in the ileum like you get on your tongue. I am so confussed and scared he my brush IBD off as IBS and don't know what to do

Where are you geographically? Southeast US or West coast? If I can suggest that you see a Doctor that specializes in IBS/Crohns. Please PM me if you have questions.

 

[Blu's Tale]

Where are you geographically? Southeast US or West coast? If I can suggest that you see a Doctor that specializes in IBS/Crohns. Please PM me if you have questions.

I am in the U.K. And currently seeing a gastroenterologist to determine if IBS/Crohns but he believes more IBS

 

[CeeCeeGo]

I am not sure but I was always under the impression that a Faecal Calprotectin poo test can determine whether it is IBS or IBD (Crohns or UC). I currently live in Newcastle and am about to move to Liverpool. If I can help, please PM me.

It can be scary when you are first diagnosed, but like Ron says, if you are not sure push for a second opinion. I was diagnosed with Crohns and four years on, they think that some of my symptoms can also be IBS (more stress and diet related).

This site is an absolute blessing. There are people on here that have experienced most situations and are always happy to listen. Really important to have people that know what you are going through.

Take care.:ghug:

 

[Blu's Tale]

I am not sure but I was always under the impression that a Faecal Calprotectin poo test can determine whether it is IBS or IBD (Crohns or UC). I currently live in Newcastle and am about to move to Liverpool. If I can help, please PM me.



It can be scary when you are first diagnosed, but like Ron says, if you are not sure push for a second opinion. I was diagnosed with Crohns and four years on, they think that some of my symptoms can also be IBS (more stress and diet related).



This site is an absolute blessing. There are people on here that have experienced most situations and are always happy to listen. Really important to have people that know what you are going through.



Take care.:ghug:

I have to do another poo test and having a small bowel MRI on Monday I am keeping everything crossed right now the if it is Crohns something shows up

 

[scottsma]

Please let us know how you get on.Being in the UK though, you might have to wait a few weeks for results.But you know how you feel and how you would like to feel,so if you're not happy,tell them so.Don't let them brush you off. Feel better soon.

It might help to keep a diary of symptoms etc in case you forget to mention anything at your appointment.

 

[Blu's Tale]

Had my small bowel MRI today and dropped my [emoji90] sample of for the faecal Calprotectin test xxx keeping fingers crossed if something there it shows up x

 

[ronroush7]

Had my small bowel MRI today and dropped my [emoji90] sample of for the faecal Calprotectin test xxx keeping fingers crossed if something there it shows up x

Keep us updated. Support and prayers

 

[DougUte]

Had my small bowel MRI today and dropped my [emoji90] sample of for the faecal Calprotectin test xxx keeping fingers crossed if something there it shows up x

I hope the testing generates the results you need.

 

[Blu's Tale]

I am not sure but I was always under the impression that a Faecal Calprotectin poo test can determine whether it is IBS or IBD (Crohns or UC). I currently live in Newcastle and am about to move to Liverpool. If I can help, please PM me.



It can be scary when you are first diagnosed, but like Ron says, if you are not sure push for a second opinion. I was diagnosed with Crohns and four years on, they think that some of my symptoms can also be IBS (more stress and diet related).



This site is an absolute blessing. There are people on here that have experienced most situations and are always happy to listen. Really important to have people that know what you are going through.



Take care.:ghug:

Update: faecal calprotectin test was 30 and MRI normal my consultant doesn't want to put a label on me thinks probably IBS not convinced it's Crohns my options where:

take a fibre tablet or 1 Imodium at night for probably rest of my life or see if it can be controlled by diet and refer me to dietitian so gone for third option

When I asked about my colonoscopy consultant Said that ulcers are common and never mentioned inflammation. He said that he didn't see the pictures from colonoscopy so can't comment on what was seen the only way is for him to do another one. Will try the dietitian if it doesn't help then back to him again. So fed up

 

[valleysangel92]

When I asked about my colonoscopy consultant Said that ulcers are common and never mentioned inflammation. He said that he didn't see the pictures from colonoscopy so can't comment on what was seen the only way is for him to do another one. Will try the dietitian if it doesn't help then back to him again. So fed up

Is there any way you can get a second opinion? I have always been told that ulcers = inflammation. They are common yes, but not in the colon or small bowel, they are usually caused by some sort of on going inflammation like UC, Crohns or diverticulitis. Its possible that there is some inflammation there that can't be seen by the naked eye so looking at pictures wouldnt help him anyway. IBS doesnt cause bleeding and it wouldn't cause inflammation to show on biopsies.

 

[eleanor_rigby]

IBS doesnt cause bleeding and it wouldn't cause inflammation to show on biopsies.

Yes. This is the most important point.

 

[ronroush7]

Keep us updated. Support and prayers

Amen.

 

[Blu's Tale]

Yes. This is the most important point.

Thank you x I'm going to go with him for the moment but if it get really bad I will go back again

 

[Blu's Tale]

Yes. This is the most important point.

Thank you will keep going

 

[DougUte]

My most recent colonoscopy found an active ulcer at my anastamosis site, in the colon. The biopsies came back and showed inflammation. So my GI determined that it was a sign of active crohn's disease. Sounds like a similar scenario you have. I would get a second opinion if I were you.

 

[Blu's Tale]

My most recent colonoscopy found an active ulcer at my anastamosis site, in the colon. The biopsies came back and showed inflammation. So my GI determined that it was a sign of active crohn's disease. Sounds like a similar scenario you have. I would get a second opinion if I were you.

Thank you

 

[Blu's Tale]

Hi just a little update x my consultant still more convinced I have IBS and referred me to a dietitian. Spoke to the dietitian yesterday and she was lovely told her all my concerns but I agreed to give it a good go. She has put me on the FODMAP diet and said if I get poorly at all in the next 8weeks I have to go straight to my doctors and she is going to put all my concerns into a letter to my consultant and do it in a nice way... for once I feel like someone is listening to me x

 

[ronroush7]

Hi just a little update x my consultant still more convinced I have IBS and referred me to a dietitian. Spoke to the dietitian yesterday and she was lovely told her all my concerns but I agreed to give it a good go. She has put me on the FODMAP diet and said if I get poorly at all in the next 8weeks I have to go straight to my doctors and she is going to put all my concerns into a letter to my consultant and do it in a nice way... for once I feel like someone is listening to me x

Great.