What Next?

[dalekdavros]

Hi,
I am sorry for being a nuisance by posting on this forum. I have been having a range of problems since last year, and whilst I know that medical advice can't be given, I would value any opinions as to the direction this might be heading in.

This time last year, I started with experiencing rectal bleeding. It was only in small quantities. I went to my GP, they thought it was haemorrhoids and prescribed cream to help with this, but the bleeding progressed. I had a sigmoidoscopy that was far from successful as the bowel preparation didn't work very well, but they found loads of inflammatory polyps. I had to repeat the colonoscopy twice since as the initial repeat was to remove the polyps, but during this time, they found rectal ulcerations and proctitis. My second colonoscopy that I had around February time found very aggressive ulcerations, and polyps, but they couldn't get access to the Terminal Ileum. Biopsies were taken and whilst 'active inflammation' was noted, they couldn't find any granulomas and so my consultant said it is probably Solitary Rectal Ulcer syndrome and rectal prolapse.

To be sure, the consultant requested an MRI of my small bowel with diffusion and one on my pelvis and rectal area. I also had a faecal calprotectin that came back in the 1000's > and the normal range for the one I had was up to 100.

The rectal MRI scan identified lymph nodes enlarged, long-standing proctitis and ascites.

The small bowel MRI identified 99 mm thick walled diffusion restriction of the terminal ileum and explictly states 'consistent with Crohn's disease.'

I previously a few years ago had a capsule endoscopy etc, as I lost a lot of weight and was very poorly, and they thought it was Celiac at the time. But then, the bleeding was a new symptom and now I am in this situation.

I am a bit worried as my consultant categorically told me before the MRI that Crohn's Disease simply isn't possible, and now it states it on the MRI report, I wondered what do I do if they dismiss it? Also, do you think this is in keeping with Crohn's disease? Also, is it possible for biopsies to miss and not identify Crohn's but be flagged on an MRI?

I am very sorry for this long post, but I am in a lot of pain when I need to go to toilet, and I am waiting for a follow-up appointment, and the amount of bleeding is getting worse and I wanted to go to my appointment prepared to reach a conclusion as I've been going through this for quite sometime.

Thank you for any advice that can be given.

 

[Scipio]

I am a bit worried as my consultant categorically told me before the MRI that Crohn's Disease simply isn't possible, and now it states it on the MRI report, I wondered what do I do if they dismiss it? Also, do you think this is in keeping with Crohn's disease? Also, is it possible for biopsies to miss and not identify Crohn's but be flagged on an MRI?

I can't see anything in your post that absolutely rules out Crohn's. There are lots of diagnosed cases of Crohn's disease where granulomas were not seen on biopsy (my Crohn's for example). The presence of granulomas rules Crohn's in, but the absence of them does not rule Crohn's out. It may just be that the biopsy specimens the doc collected didn't happen to hit any granulomas.

From what you have posted, ulcerative colitis cannot be ruled out either, although thickening in the terminal ileum suggests Crohn's over UC. My suggestion would be to repeat the capsule camera endoscopy. Sighting any ulcers in the small bowel, even aphthous lesions, would probably cinch a Crohn's diagnosis. Seeing no ulcers anywhere in the small bowel would tell against Crohn's although not rule it out completely. And UC would still be a possibility.

 

[my little penguin]

Only 33% of crohns patients have granulomas found on biopsy
So a nice to have check the crohns box by pathology - but 67% who have Crohn’s disease don’t have granulomas.
Wall thickening at the TI
High fecal cal
Could point to inflammation as well as crohns
You can have rectal prolapse and have crohns as part of the inflammatory process
My son does and had granulomas found on biopsy .
Good luck with your appt.

 

[dalekdavros]

Hi,
Thank you so much. So do you think it is still possible to get a diagnosis or will do you think the consultant will dismiss it again? It is so crippling with all the bleeding.

Thank you again for all the advice and help.

 

[Scipio]

Thank you so much. So do you think it is still possible to get a diagnosis or will do you think the consultant will dismiss it again? It is so crippling with all the bleeding.

It should be possible to get a diagnosis. If not, get a second opinion. Switch to a new doctor.

 

[dalekdavros]

Hi,
Thank you so much for your help and advice. I also forgot to add that my bloods have shown that I have iron deficiency, folate deficiency, and I have vitamin B12 deficiency as well.

What I am most worried about is that when I first went to see the consultant, they basically dismissed IBD in any shape or form and said it has been completely ruled out, and they ran the scan to validate this. And because they were so abrupt with me, I am scared to challenge it.

 

[my little penguin]

Understand as a doctor they have lots of patients .
You are just the one .
Advocate for yourself
You can politely state your opinion to doctors and still be heard
I try to teach my adult child this.
For years I was “that mom” I am sure to the doctors .
But early on I learned it was of no benefit to my child (only 7 at the time ) if I didn’t speak up
Ask questions etc…
No one else was going to fight to get him better.
I am not saying it crohns
I am saying you know your body
And you know something is wrong
Good luck

 

[Andersen007]

I also didnt have granulomas on my biopsies, and I have Crohns. Significantly elevated calpro (especially if its persistent), inflammation in both the colon as well as the terminal ileum as indicated by multiple examinations that also lasts over time, malabsorption, as well as enlarged lymph nodes on imaging, to me these are all consistent with Crohns disease. If the doctor doesnt believe that, he needs to give you a clear explanation on what he thinks it is that explains all these findings consistently. And definetly seeking a second, or even third opinion in that case would be recommended. Also in my mind it would have been absolutely nonsensical to “rule out” IBD by just examining the colon. I never had anything there, just like 25-30% of people with Crohn’s dont either. And yours wasnt even clean there. Btw except the rectal part, was your colonoscopy completely clear in the descending, transverse, and ascending colon?

 

[mummytoone]

Understand as a doctor they have lots of patients .
You are just the one .
Advocate for yourself
You can politely state your opinion to doctors and still be heard
I try to teach my adult child this.
For years I was “that mom” I am sure to the doctors .
But early on I learned it was of no benefit to my child (only 7 at the time ) if I didn’t speak up
Ask questions etc…
No one else was going to fight to get him better.
I am not saying it crohns
I am saying you know your body
And you know something is wrong
Good luck

I needed to hear this today I'm so fed up of being asked if it could be anxiety I know my child and I know there's something going on, I just wish the wait wasn't as long

 

[Entchen]

The part about IBD being dismissed as a possible explanation is something that a number of us have heard, regrettably. The trick is for those involved to keep doing their due diligence anyway—and I hope that they do so in your case as well.

(p.s. The reason that it was “impossible” for it to be Crohn’s in my case? “You’re too old.”
I was 30 and had first gone to the doctor with quite clear symptoms at 22.)

Take good care.

Hi,
Thank you so much for your help and advice. I also forgot to add that my bloods have shown that I have iron deficiency, folate deficiency, and I have vitamin B12 deficiency as well.

What I am most worried about is that when I first went to see the consultant, they basically dismissed IBD in any shape or form and said it has been completely ruled out, and they ran the scan to validate this. And because they were so abrupt with me, I am scared to challenge it.