Early stages of diagnosis

[Slore]

Hi all, I’ve not posted before but I would love to hear comments as I’ve seen some of the great posts everyone has made on here. I am feeling pretty rubbish and it’s the first day I’ve had to take off work for it.

Current problem:

Over the last couple of weeks, I’m so tired and can only describe this as fatigued where I just cannot concentrate and need to sleep. It gives me a massive headache and nauseous feeling and I just need to go to bed . My diarrhoea is worse than normal and bloating and cramps are more than the usual discomfort. Is this all part of an IBS flare up?

My history:

For many years I’ve always suffered with bloating and stomach cramps and tried different medications to help. I’d generally have a feeling of not being empty with only infrequent bouts of diarrhoea. I visited the GP and i was sent away for blood tests and nothing has come unusual had come back from these. It’s not stopped me living a normal life until around 18 months ago.

The frequency of my diarrhoea dramatically increased and another visit to my GP was made. I had further blood tests and was told it was IBS and advised to look at the low FODMAP diet. I’d made a diary and I now know certain foods I need to avoid to try help. Generally this has worked and I alternated between mild diarrhoea and constipation, but was still always bloated and had cramps. I had tried peppermint capsules and Mebeverine (Colofac) and they did nothing. I was then prescribed Dicycloverine and they worked incredibly well and, when I asked for another prescription, I was told that I can’t have them anymore as they’re too expensive but would ask the Gastroenterologist for advice. At this point a referral was made.

5 months later, I eventually saw a Gastroenterologist and was referred for an urgent colonoscopy. I had this in December last year and whilst some biopsies were taken, there were no concerns. I received a follow up appointment with the hospital but this isn’t until the end of April so I can only assume it’s all positive.

I still can’t get Dicycloverine again but I tried Mebeverine for another chance and it did nothing. So at the minute I’m just waiting for my next appointment with the hospital but I’m feeling pretty rubbish and totally exhausted.

Anyone have any recommendations please? Is it even worth trying to head to the GP about the same issue when I have an appointment with the Consultant in 8 weeks?

[BlackCat16]

Also ask your GI about Xifaxan (2 week treatment for bacteria) and also Viberzi. These, at least in the US, are the only two medications for IBS..and actually just the Viberzi is for IBS..the Xifaxan was originally for travelers diarrhea. I’ve been on Viberzi for a year and it’s been great! Still have issues with gas and nausea though

[BlackCat16]

I also deal with the heavy fatigue. It’s really hard to want to do anything on my days off or after work! Even getting off the couch to grab something on the counter feels like a chore. I want to start exercising again like I used to before being diagnosed but it’s it so hard to get motivated when all I am is dead tired. I hope they find a cure for this awful condition!!! I hope you find some sort of relief, we are all here for you!

[jbrking]

Hi. One thing to ask the consultant is to test for bile acid diarrhoea sometimes called bile acid/salt malabsorption. Look at the bad-uk.org website. There is also a condition called sibo, have you been tested for that? I was told for years I had IBS or what I was eating, did FODMAP, cut out wheat, dairy but made no difference. Then got referred, had colonoscopy and found nothing, then had a sehcat scan. That involves taking a tablet and a few hours later being scanned (just a small scan over your middle bit) and then scanned again a week later to see what your retention is in your bowel. Mine confirmed bile acid malabsorption (which we call bam for short). Because of bam I was found to be deficient in vitamins b12, D, iron and potassium and I struggle to main a level of good cholesterol, so I’m now on supplements for all. That could explain the fatigue and aches. It’s the most undiagnosed thing and often mistaken. And it is possible to have both bam and IBS. Please look at website I said and ask your consultant. Good luck x

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