IBS-D symptoms that don't match up

[Bek]

Hiya, does anyone here have IBS-D but find it hard to believe as some of the symptoms don't match up?

For example, my tummy pains are always in my upper abdomen, never lower than the belly button and I don't have the stereotypical cramps that are relieved by a bowel movement, instead mine are often sharp or a constant dull ache that doesn't go away. I have months where I am in severe pain, dizziness, nausea, bloating so bad that I look 9 months pregnant, even on an empty stomach, then I can have weeks where I'm completely fine!

My IBS doesn't seem related to my toilet habits, food or stress? It just flares up and sticks around for ages, no matter what I do to control it and it's really hard to carry on with my normal routines.

I have had stool samples done, blood tests, abdomen ultrasound all clear of anything. I have also had a small bowel CT scan with contrast dye 8 weeks ago, which I am still waiting on results for, but my consultant doesn't think it's anything more sinister as this has been going on since September 2021 and I have no weight loss, blood in stools etc.

If anyone else has a similar experience, I would be grateful of any advice and support please.

[Jeffrey Roberts]

HI Bek,

This does sound rather curious. I'd be interested to know the results of your small bowel CT to rule out Crohn's disease in your small bowel. That's what comes to mind based on your description though not losing weight doesn't line up either. It doesn't sound like IBS, though you didn't mention whether you are having diarrhea or constipation during these flares.

Has anyone suggested to have a gynecological examination to rule out anything like that?

[Bek]

Hi, thanks so much for your reply!

I am anxiously awaiting my CT results, it was of the small bowel, abdomen and pelvis, so hopefully that will show if it's something else? Apparently there is a 13 week wait for CT results!

I had an internal abdominal ultrasound (gynecology) and that showed no issues apart from a small fibroid, but was told that shouldn't be causing me any problems. 

I always have diarreah, never constipated. The whole reason I went to my GP back in September 2021 was because of my tummy pains, which as I say are always upper abdomen, so they did bloods, ultrasound of my abdomen then and internal ultrasound of my lady parts! But as I was still in pain they agreed to the CT, they weren't originally going to do it because they said I was too young (I'm 39) to have anything more serious! The consultant then went on to say that mine wasn't acute because it is always there and it's nothing progressive (such as cancer) because my symptoms come and go and haven't changed over time, so it's something chronic and he suspects IBS-D. I even asked for stool tests and my calprotectin level was 58, so only slightly raised and my FIT test was <7 so no traces of blood!

I feel at a loss as when I have these bad flare ups they can last months and I feel sick, dizzy, have reflux and the pain is horrendous!

[Jeffrey Roberts]

Gosh, that's a long wait for CT results though to be honest, an MRI or MRE would have been better for you as a young woman to protect yourself from radiation. I can understand why they were hesitant.

That's a relief about the abdominal ultrasound. I agree about the small fibroid not likely being the cause. Also, the calprotectin is low so no obvious inflammation in your large bowel.

There are a bunch of what are called functional GI disorders that can be chronic and not show up with any medical procedures or tests. I do wonder if this isn't more upper GI like you've been saying and it is dyspepsia or GERD. Upper GI problems can lead to lower GI problems because you just aren't digesting things well.

It could even be malabsorption which is why you are getting so bloated and look like you are 9 months pregnant.

Have you ever been tested for gluten intolerance? (celiac disease)

[Bek]

It's a horrible waiting game! I'm hoping to get some answers soon 🙏 

I did wonder about upper GI problems as I don't digest all foods well (sometimes my food comes out as it goes in) sorry if that's TMI!

I'm on lots of multivitamins each day, 3 monthly B12 injections and also take amitriptyline for the pain. 

I have been tested for Celiac disease and have had tests for peri menopause too, but all were clear!

I feel as though I am one of those people who will always be a mystery when it comes to diagnosis, which is frustrating when I just want to know what to do to make me feel better again!

[Jeffrey Roberts]

It sounds like you are really hitting all the right things to rule things out.

Not TMI. Regurgitation of food can be a host of things, but also GERD.

There is an excellent Functional GI doctor in the UK named Dr. Alexander Ford at the University of Leeds. He does mostly research, but I think he would be able to get to the bottom of this if your current doctor(s) aren't able to.

[Bek]

Thank you for the recommendation! After I get my CT results, I will enquire about that doctor 😊

[Bek]

Had my CT results back and all clear! So now I'm very confused!

 I have looked more into functional dyspepsia and think the symptoms sound more like mine

[Jeffrey Roberts]

Well, it's good that your results were clear or normal. I know that feeling of wanting something to show up to give you a proper diagnosis.

Functional dyspepsia does have treatment options. I'm not certain if the diagnosis is confirmed by your medical history or whether by gastroscopy or barium swallow.

 

[Bek]

I am going to talk more to my GI consultant to see if they'll do me a barium swallow, as after researching more about IBS-D and Functional Dyspepsia, I think FD seems more likely to me.

Thanks for your reply and your help