AIBU to think somethings not right with my stomach?

[medicallycomplicated]

Hi everyone.

I'll try and keep this short and sweet. I'm not getting anywhere with my GP so have contacted my oncologist today and awaiting a response.

Background: diagnosed with peritoneal mesothelioma at 23 (asbestos cancer)
I have a congenital maltotated bowel and intestine. I've had multiple surgeries on my abdomen including a full laparotomy from my breastbone to my Pubic bone. Plus lots of heated internal chemo through chest and tummy drains. IVF and a pregnancy & C section.

My stomach is a mess internally but there's a brief overview of what's happened over the last few years. I have been tested for IBS / colitis / crones (which is how they found my malrotation and cancer.)

Anyway (sorry, just to paint the picture.)
I've always been pretty slim size 8. I closely watch what I eat as my stomach is extremely sensitive so everything is homemade / organic. No red meat. Plenty of the right foods. Limit gluten.
When I wake up my stomach is flat. Not quite surfboard but flat enough. When evening time comes the difference is incredible. My stomach genuinely goes to about 5 months pregnant but it's only the bottom half. From where my belly button was down to my pubic bone. Top half stays the same. It's getting really uncomfortable and it's really getting me down. Doc keeps putting it down to 'my abdo has been through a lot so it's bound to happen' but it's SO painful. I go so incredibly round and wide. No certain food triggers it. I do moderate exercise. If I weigh myself I also put on between 4-8lb a day!! Next morning gone. Rinse and repeat.

Is this normal? Does anyone else have this? Or should I be pushing more because of my diagnoses? I would just like some bloods done and maybe a scan. It's making me really self conscious and I don't know what's causing it. I've trialled just having meal replacement shakes for a day and it's still doing it.

I'm so self conscious.
I just hope I would be taken more seriously by my GP.

This is probably quite outing due to my age and diagnosis. (The daily fail picked it up when it happened so this might ring some bells with some)

Any suggestions? Does anyone else get this?
Thank you!

This may be to do with your gut health?
Are you able to eat a variety of prebiotics or are some too hard to digest for you?
I don't know if it is possible to have realiable tests to learn more about your gut. Maybe ask to move this threqd to another section to do with health as it may disappear without many comments on this busy board.

It's really normal to have a weight increase at the end of the day and by quite a lot so that side of things is normal. I'd look into a probiotic to take daily but I wouldn't dismiss what your doctor said,it does sound like you've been through and awful lot.

Thank you for the replies. I'll ask to get it moved over - I can do prebiotics but they caused me to bloat so much and gave me loose bowels so I have to limit them.

I loosely follow FODMAP as I get the least amount of pain / symptoms.

But good news, I sent pictures to my oncologist of my tummy and he has booked me in for an MRI in 2 weeks time. I didn't expect that to happen as the NHS is so incredibly stretched but maybe that will give me some answers. My tumour markers are slightly raised in my bloods but they have always been on the higher side since my diagnosis anyway. They've come down since I've had the tumours were removed.

It's a bloody minefield but I'm so grateful for such a good team who are treating me.

If probiotics give you bloat, it might well be very slow gut motility/transit because probiotics would make that worse.

That means you can only really stomach fibre if it's insoluble, NOT soluble and also giving probiotics a miss as they can slow down motility and you can keep gut health healthy with food choices in your case - basically a bulk forming laxative (very good for you and not habit forming, just helps your intestines feel stimulated enough to do their job!) Is exactly what you need. I suffered for donkeys years and finally worked out this is what I needed and it's literally changed my life!

I'm really interested in this @Outofthepark

My gut situation is different to OPs who sounds like they have seriously been through it. I have the same absolute random bloating triggered by more and more things to the point I don't even want to eat anymore. I too loosely follow fodmap. Had to eliminate gluten entirely but finding almost daily, more and more things my stomach can't tolerate. It's really getting me down.

Probiotics haven't really worked. I became used to being bloated by the end of the day and it being gone in the morning. That became my norm. It never wakes me up overnight. What I am really getting down about is this new thing..

Bloating but not now necessarily as bad as usual but with a horrible stitch like dull pain right across my abdomen, mainly upper. Like a massive pair of hands is gripping me tightly underneath my ribcage. Last night I woke up in pain and could not get comfortable. In the winter, a hot water bottle would help but for obvious reasons no good in the heat of the summer.

Last night was horrible and it still hurts this morning.. Stomach rumbling like mad. I am trying not to eat before 1/2pm and quit eating by 7pm at the moment to try and give my stomach a rest.

I really am at my wits end and Gp was useless. May I ask the name or link for the product you swear by please? Thank you x

I don’t have any advice but just want to say that I do recognise your story, so it rings some bells with me. I hope you get it sorted.

@Twiggledee Check some info on prebiotics to see if you get enough of them in your diet. It is about having variety of quality plant based food. Not quantity. Think alongside - 30 different plant based food a week, where a pinch or a tbsp of it is enough to count. And remove all Highly Processed food excluding any bread, pasta and rice from your diet.

Thank you Talknomore