My IBD Diagnosis

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Before I got my permanent ileostomy, I was tested to check that I did indeed only have Ulcerative Colitis and that I didn’t have Crohn's. The test confirmed that I only had Ulcerative Colitis (UC) and one ileostomy and rectal stump removal later, things were looking up.

14 years later in July 2022, my “phantom rectum” was occurring every night alongside some terrible stomach pain. By the end of July, I was struggling to leave the house, or even my bedroom for that matter. I was in pain, experiencing spasms and my output was constantly fluid or mucus. All the same symptoms I experienced when my UC (Ulcerative Colitis) was at its worst, except, this time, I was missing my butthole!

I went to see my GP and explained my symptoms. The GP insisted that my symptoms were being caused by an interaction with a new medication that had been added to my existing meds. Against my better judgement, I accepted this and went home, but the problems continued.

It got to the end of August and my symptoms weren’t any better and were now starting to interfere with my everyday life. I was now having to miss days out and holidays with my family, so I decided it was time to really do something about how I was feeling.

I went back to my GP, I asked to have a blood test to check my inflammation markers. Unfortunately, like many doctors' surgeries, I don’t see the same GP each time, so I was seeing someone I had never seen before and wasn’t familiar with my history. I was told by the GP that I couldn’t demand blood tests and that a blood test I had done in April 2022 had not flagged anything to be concerned about. At this point, I had a choice, I could take no for an answer, or stand my ground. I made it clear that I didn’t ask to be tested for diabetes and the blood test wouldn’t have been indicative of inflammation in the bowel/ IBD and unfortunately found myself in a situation where I refused to leave her office until I was given a blood test form. Something I would never normally do, but my symptoms had gone on for long enough!

I got the results of the blood test back, which indicated that I had a borderline reading for inflammation markers. By September, I had lost 1.5 stone and I decided to go back to the GP. Thankfully, I sat down with someone who actually listened. I was sent for more blood tests for Coeliac Disease and Ovarian Cancer, as well as an ultrasound on my small bowel. I was given the “all clear” for the Coeliac Disease and my bowel ultrasound was clear, but the Ovarian Cancer blood test came back with high markers.

As you can imagine, this threw in a whole load of worry and stress, but thankfully I was given “all clear”. While meeting with the gynaecologist, they mentioned that IBD can cause a false positive on an Ovarian Cancer blood test and that the GP really should take my concerns seriously.

I was referred to a gastroenterologist. I was in the room less than 2 minutes before he agreed with me, that I did have IBD and that it was probably Crohn's in my small bowel.

I was started on Pentasa and scheduled for an ileoscopy in December 2022.

During my ileoscopy I had gas and air, so I could be nosey and see what happened and how. It wasn’t painful at all, and I only felt a little bit of discomfort from a tugging type feeling.

I’m now just waiting on the results, but I have to say, I’ve never been happier to be right about something, even though it’s IBD and it’s not very nice, at least I know that we can start to explore the options I have to hopefully make it more manageable.

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by Michelle Williams

Michelle Williams

About the author

My name is Michelle; I live in Kent with my husband and son. I have a permanent ileostomy as a result of Ulcerative Colitis. You can follow me on twitter.