Ulcers in terminal ileum

[Sunita77]

Hi,

I've posted on here a couple of times, so I won't repeat myself! I had my gallbladder out in June 2020 and developed severe diarrhoea. GP referred me to Gastroenterology (currently going through the IBD route for a diagnosis as my calprotectin levels have been elevated). I had my second colonoscopy last year which came back normal as normal as did the biopsies. I then had a capsule endoscopy.

The results took nearly 4 months to come back. Yesterday the consultant wrote that some small ulcers were noticed in the terminal ileum but a diagnosis for IBD isn't sufficient enough as my biopsies came back normal, soo he has asked me to do a stool sample again to check for inflammation within my bowel. He is going to see me again to see where I go from here. The small ulcers were noticed in my first colonoscopy in 2020 but biopsies were normal but not noticed in my recent colonoscopy.

I have had 'ibs' since 2007 and always thought it was something more but since having my gallbladder out my symptoms have got worse! I thought this was my last shot to get a diagnosis as this has been hanging over my head for 16 years!

Has anyone been in a similar situation? Should I ask my consultant to go down the bile acid malabsorption route as my symptoms fit all the criteria.

Thank you for reading

[012703060610]

Hi there - I have been through a parade of GI doctors. It took them three years to figure out I didn't just have IBS C/D. The pill endoscopy showed delayed gastric emptying and my stomach wasn't moving. All of my biopsies come back normal but my Rheumatologist believes I have microscopic colitis that is hard to detect and I would need to be off all immunosuppressive meds to get a clean coloncoscopy....which I am still doing. Anyway, I started on LDN 3mgs per day and it has changed my bowel life (and autoimmune life). Please take a read about LDN and how it works. Some of my doctors are ok to give a diagnosis if a treatments works.....so for example, knowing that the LDN has helped so much, my GI is ok saying some form of IBD. For all we know there are 100s more IBD conditions. My sister had her gallbladder out and then suffered with more severe diarrhea after. She has a fully modified diet with none of her triggers and has done a whole lot better too.

[Sunita77 in reply to 012703060610]

Thank you for replying. I hope you're feeling better. I feel as if I do have some sort of inflammatory condition but it's hard just getting a diagnosis.

[bantam12 in reply to Sunita77]

Definitely talk to your Drs about bile acid diarrhoea. I’ve had Ulcerative Colitis for many years but in remission until I had my gallbladder out ! I literally couldn’t eat anything. I was given a bile acid binder called Colestyramine and it was a life saver, I take just one sachet a day and it allows me to eat most things although I do steer clear of anything to fatty or spicy.

[Sunita77 in reply to bantam12]

Thank you for replying. My consultant has gone down the IBD route but will mention it to him during my next appointment.

[bantam12 in reply to Sunita77]

If an IBD has been ruled out you need to look at bile acid malabsorption which is very common after gallbladder surgery but Drs often don’t know how to treat it. If your Dr will prescribe Colestyramine it’s worth trying.

[Sunita77 in reply to bantam12]

My calprotectin levels have been elevated. My consultant hasn't ruled out IBD yet but he asked me to do another stool sample to examine the inflammation within my bowel. He is then going to discuss the way forward for me. I will mention BAM as I have all the symptoms.

[012703060610 in reply to bantam12]

Exactly what they put my sister on and with diet changes she is living very normal. I'm jealous!