Looking for some

[allmycircuits]

Hey,

grateful for anyone who may read my story and share some advice.

I’ve basically been written off completely by the NHS, mostly due to a clear biopsy. Since then no doctor has been interested at all and extremely dismissive.

Notable findings have been 4 aphthous ulcers on terminal ileum, 1 duodenal ulcer, bile salt malabsorption (diagnosed by SEHCAT), low serum folate and low Vitamin D.

Symptoms suck so much, I’m miserable everyday. Fatigue, abdominal pain, severe bloating, urgency, diarrhoea and joint pains.

I’m on colesevelam for BAM, but loperamide is doing the heavy lifting and necessary whenever I leave the house.

Shall I fight for a second opinion? Possibly go private? Does anyone have any Hampshire, UK recommendations?

 

[Scipio]

Hmmm...I think another opinion might be in order - preferably from an IBD specialist.

In my own case I had symptoms of primarily anemia and abdominal pain, and it was the sighting of a few aphthous ulcers in my terminal ileum by capsule camera endoscopy that caused my GI to diagnose Crohn's. And being subsequently treated for Crohn's has kept my disease under control since then. The terminal ileum ulcers were the key to the diagnosis. It looks like your docs are looking for something more. As far as I know the diagnostic criteria are very similar between the UK and the US, but perhaps NHS has some additional rules that I am unaware of.

 

[allmycircuits]

Hi Scipio, thank you for taking the time and for sharing your story- especially after I managed to mess up the post title!

I was woken up during my scope as the doctor showed me the ulcers on the screen and said it looked like Crohn's, but the negative biopsy was perhaps the thing that stopped me from getting a diagnosis, despite all of the other markers and my symptoms.

Even more frustrating, is my consultant is an IBD specialist. I think I may need to book in privately with him again to get him in a room as it's been a year since I last had that opportunity and that was before all my tests. I may just need to plead my case and ask him to consider diagnosing me based on all the evidence despite the negative biopsy. I am in desperate need of some treatment, my symptoms started 6+ years ago.

Perhaps the NHS has its own stricter criteria for diagnosis, but going private will allow a more nuanced view of it. I am glad to hear you have been able to get the treatment you need.

 

[my little penguin]

When you say negative biopsy
What did the biopsy report say ?

Some pathologists won’t check the box for crohns on the pathology report unless non caseating granulomas are found .
However they are only present in 33% of folks with crohns .

knowing what the biopsy report states is important for a second opinion or even private visit with the same doc .

Any symptoms in other systems like skin or joints ?

 

[allmycircuits]

I didn’t receive a biopsy report. The only thing I received about the biopsy was “Aphthous ulceration in the terminal ileum. Biopsies NAD”

The “same doc” in this instance did the procedure and will have full access to the results in more detail. I haven’t been told anything other than “Biopsies NAD” and I think that’s possibly what is preventing the box being checked.

I do get pretty bad joint pains all over, but it’s most noticeable in my feet and hands. Skin is normal apart from I have developed bad dandruff out of nowhere over the past few years.

 

[allmycircuits]

Hmmm...I think another opinion might be in order - preferably from an IBD specialist.

In my own case I had symptoms of primarily anemia and abdominal pain, and it was the sighting of a few aphthous ulcers in my terminal ileum by capsule camera endoscopy that caused my GI to diagnose Crohn's. And being subsequently treated for Crohn's has kept my disease under control since then. The terminal ileum ulcers were the key to the diagnosis. It looks like your docs are looking for something more. As far as I know the diagnostic criteria are very similar between the UK and the US, but perhaps NHS has some additional rules that I am unaware of.

Hi Scipio,

I took your advice and chased my consultant up and he agreed that they should have investigated and considered the ulcers further. I am booked in for another colonoscopy the end of this week, and he has said that if the ulcers are still there he will diagnose me there and then and I can hopefully get some treatment.

My only fear now is that, knowing my luck, the ulcers have since disappeared (it was nearly a year ago since they were first spotted) and I will be dismissed once again and left untreated for another year. I am really hoping that seeing as my case is mild and I am getting by (only just) that some treatment will get me back on track to living a normal-ish life again.

Thank you for the encouragement in any case, wish me luck!

 

[Scipio]

Good luck!

It seems odd to be wishing and hoping to be diagnosed with a serious, incurable disease. But I understand the sentiment, because until you have a diagnosis you don't have any path forward. And fortunately there are multiple treatments available for Crohn's disease. None of them are cures, but except for the worst cases, a treatment that will enable you to live a pretty much normal life can be found - some combination of medication, diet, and lifestyle that works for you.

 

[allmycircuits]

Absolutely, and I hope I didn't come across as insensitive in doing so, I'm just at the end of my rope with coping by myself without treatment.

The colonoscopy showed that the ulcers had healed and were no longer present. Although they had been there all of last year (seen on colonoscopy and capsule endoscopy). My doctor therefore told me he does not think that treating me for Crohn's is the way forward, but has no other suggestion for now. He did take biopsies, so that would be the only thing that turns the tide depending on the results.

I'm really not looking forward to having to continue to cope with my symptoms without any treatment.

I would still consider the low folate, vitamin D, Bile Acid Malabsorption and previous Ileum ulcers to point to possible Crohn's and maybe finding a new consultant for a second opinion may be a path forward.

Thanks for your help, as it was your advice that pushed me to go back to him in the first place and get the colonoscopy- it's just frustrating coming away from these exams with more questions than answers!

 

[my little penguin]

Have they done imaging MRE ?
That may show areas not seen in a scope
Fwiw my son at dx had a nice pink healthy colon with mil friable areas -nothing significant
But biopsy showed chronic inflammation/acut inflammation /granulomas and focal changes so he was dx with crohns from biopsy alone
MRE showed mild thickening of ti
Again hope you get results
Having symptoms but no plan or dx stinks
Went round and round (years ) to get a dx for his sweets syndrome
So even if it’s not crohns
Keep looking

 

[allmycircuits]

I've had the works! Gastrocopy x2, Colonoscopy x3, Capsule Pill Cam SEHCAT, and MRI.
So my non-diagnosis is most definitely not for lack of searching for answers, and I am thankful that I have had these opportunities.
The only findings have been low Folate and Vitamin D on blood tests, Ulcers in colonoscopy and Pill Cam and Bile Acid Malabsorption from SEHCAT. Then there is the daily debilitating symptoms of course, which have kept me fighting for answers.

Crohn's was only suggested as a possibility in my case for the first time around a year ago, but I have had symptoms for 6 years.

I am really sorry to hear that your son had trouble getting a diagnosis for sweets syndrome, I hope that he is well and managing okay now.