Update + Advice please

[Lewis_mackenzie]

I’ve been having GI problems for nearly 6 months now. Since returning from university early December I have been having really quite severe abdominal pains Everyday. It is typically brought about by eating (2+ hours after eating and lasts hours). I have followed a very strict fodmap diet over the last few weeks but I have experienced no relief! Mebeverine, buscapan and peppermint capsules are of no relief either. I have been resorting to painkillers (codeine!). My parents brought in a reflexologist to try some relaxation techniques but by the second session I was experiencing too much pain and we ended early.. she told me I need to see a specialist.

I haven’t left the house all Christmas due to feeling so unwell.. I have made the decision not to return to university and defer the year as I am in no shape to continue studies until I can enter remission. I have been referred by my GP for a colonoscopy and endoscopy.

This last month has been very challenging, physically and mentally. I didn’t expect these symptoms to persist for so long, and to be so severe for that matter. My life is very much at a standstill.

Any advice for dealing with severe IBS? Anyone been through anything like this!? Thanks

[Maureen1958]

Hi, I really feel for you. I just wanted to say have you looked into Bile Acid Malabsorption. See link below.

gutscharity.org.uk/advice-a...

Maureen.

[weegmack]

Hey there. I’m so sorry you’ve been so unwell and struggling. I completely understand the mental toll this takes on you and I’m so sorry you’ve had to defer your Uni place. I’ve had several endoscopies and a couple of colonoscopies. Do you want to know what they’re like? I don’t want to bombard you with info if you’d rather talk to your gastro. Do you know when you’ll be seeing the gastro?

About FODMAP - are you doing this with a trained dietician? In my experience, it can cause more problems unless you’re getting a lot of help with it.

Can you tell me any background to your GI problems? I’m just wondering if something set it off - like food poisoning, a stomach bug or even covid (I had severe gastro problems when I had covid, on top of the ones I already have!). You can private message me if you would rather.x

[winfong]

Sounds terrible. That said, it's probably not that uncommon. You're definitely not alone.

Do know, though, that this period will pass. Also realize that you may have this for awhile (I was about the same age when I first started having issues). It's pretty important to dig into it now and see what works for you (sounds like you've already gotten started on that, so that's good). It's so individual, and also tends to change over time.

Try not to put too much pressure on yourself. I find it's a vicious cycle that way. I'm sure you'll get some more responses to your post, but just try rooting around on this site. Lots of good stuff, so no telling what you'll find. Good luck!

[Frasina]

Hi Lewis,

You do definitely need to see a gastroenterologist as GP 's normally cannot refer you for the tests you may need; I have spoken with mine on a few occasions who told me this. However, there may be different rules pending which trust you are under... One thing I definitely do know, is that if you pay to see a gastroenterologist asap and they think you need a colonoscopy and endoscopy they will refer you directly and that will be much less of a wait than a GP referral. As a young student, you need to find out what the issue is so that you can resume your Uni studies.

I have heard reports that NHS waiting times for gastro clinic appointments are up to one year!! Would you or your parents be willing to get the ball rolling by paying in the first instance to see a gastroenterologist? They all have their profiles up online (just check out your local private hospitals). Sometimes they charge differently according to where you see them...I had to do this in recent months both for gastro and also for urology and have made much more headway than if I had waited and waited for my NHS appointments to come along (one was for 8 months after the GP had written).

I hope you get some answers soon and let us know what the outcome is.

[Lewis_mackenzie in reply to Frasina]

Hello there,Thanks for the message.

Yes, I have had an ongoing conversation with my parents about going to see a private gastroenterologist. However, according to my GP, I have been 'urgently' referred to the gastroenterologist at my local hospital. Hopefully, this means I will have my consultation soon (I hope). If not I have no choice but to go to see a private.

The issue with my symptoms is that there is no obvious cause. It is specifically confined to severe stomach/bowel pains every day and feeling very nauseous.

What is making this difficult is.. my blood is fine, stool culture is normal, inflammation markers are normal. When I went to A&E, there was nothing abnormal in the tests. All the tests say I am fine which has been made it really hard to be listened to.

[Frasina in reply to Lewis_mackenzie]

I hope 'urgent ' does mean within 2 weeks then! You probably already know that there is a strong link in the brain/gut interaction, therefore in your case you need whatever tests to be done to reveal an issue that is not showing up in your bloods. Hopefully then you will have some answers...