Active discussions

Please or to access all these features

Talk
AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

Feeling dispare at lack of help from gastro

40 replies

HonestPenguin · 30/11/2025 02:45

Posting for traffic I’m feeling really brushed off by gastro and I’m not sure what to do next. They’re saying my symptoms are IBS because I’ve had that diagnosis before. I explained that it turned out to be undiagnosed bowel endometriosis and my symptoms only resolved after surgery. Gastro is telling me that bowel endo and adhesions wouldn’t cause diarrhoea or pain, which doesn’t feel right to me. Current symptoms 1. Diarrhoea 4–20 times a day . Usually watery but sometimes hard lumps. An anaesthetist even postponed surgery because of this, but cultures didn’t show anything. 2. Pain mostly on the right side around my belly button, sometimes into my back. It’s worse a few hours after eating and at night. It can wake me up. It sometimes feels like kidney stone pain, but scans were clear. 3. Pain when trying to open bowels – sometimes the stool “peeps out” then goes back in. Warm baths and breathing help a bit. After going, it’s very sore for around 30 minutes. I use water-only cleaning and nappy cream but still sore. 4. Very limited appetite . Only tolerating toddler amounts: avocado, bananas, biscuits, chicken, cheese, fish, fruit purée, mashed potatoes with root veg coliflower, rice, soup, toast and yoghurt. 5. Feeling generally unwell – fatigue, low ferritin, occasional temperatures up to 38.3°C. 6. Joint pain , mainly right shoulder and hip. Recent tests • CRP raised.
• Low ferritin, calcium, magnesium and zinc.
• Stool sample positive for campylobacter (treated with antibiotics).
• CT scan showing inflammation in the terminal ileum , sigmoid , and rectum . Medications • Paracetamol and Buscopan are only helping a bit peppermint tea and a hot waterbottle does simmilar.
• I have no confidence Mebeverine will work.
• Iron tablets cause severe pain 3–4 hours after taking them. My GP suggested asking gastro for an iron infusion, but gastro told me to “learn to tollerate. Just feel in a state of dispare.

OP posts:
New posts on this thread. Refresh page
Original poster
HonestPenguin · 03/12/2025 02:22

@GuerrillaMyse agree gastro was useless. Not sure why he said previous symptoms weren’t endo.

have tried lactulose on pharmacist advice as suddenly unable to go to toilet due to pain.

OP posts:
GuerrillaMyse · 02/12/2025 11:30

You can absolutely get pain & diarrhoea from adhesions and you don't need me to tell you that endometriosis can cause those.
I second everyone else saying you need a second opinion from a different gastro.

Also if you've experienced blockages from adhesions, don't mess about with things like movicol until you know what you're dealing with- and only then under medical advice.

Original poster
HonestPenguin · 02/12/2025 07:45

Sorry @Overwhelmedotter frustrating you weren’t believed and symptoms were so bad.

i had first endo surgery 10 years ago another 18 months ago. Symptoms started in june but worsened end of october.

OP posts:
Overwhelmedotter · 02/12/2025 02:54

Gastro is telling me that bowel endo and adhesions wouldn’t cause diarrhoea or pain, which doesn’t feel right to me.

I would agree with you there.

How long has this all been going on op?

Don’t know if my history is relevant to you but I had bowel pain, night time diarrhoea, sometimes vomiting, vomiting on waking and repeated bouts of diarrhoea in the mornings for about six years! It became a normal part of life. A bucket by my bed. I had to work from home. No medical person took me seriously, All they did was prescribe Buscopan which I had to stop because it made me dizzy.

I also had severe period pain, flooding, fibroids and an ovarian cyst. And It reached the point where I had to have a hysterectomy.

Anyway, I had my regular gynaecologist and the surgeon who removed my womb and ovaries swear blind to me that these gynaecological issues do not cause bowel or gastric problems.

And yet after my surgery they all resolved completely and I have never had bowel or nausea or vomiting issues ever again. I put on two stone in fact!

My unqualified medical opinion is that I think this is particularly relevant if you have a backwards tilting oddly shaped uterus like I did plus adhesions.

Original poster
HonestPenguin · 02/12/2025 01:37

Agree @InlandTaipan obstructions are very distinctly there is something majorly wrong with Sorry you experienced this. Fecal vomitting is something else.

OP posts:
InlandTaipan · 01/12/2025 15:27

I agree @HonestPenguin . I had a blockage last year. If it's that then it will be bilious vomiting, a lot of pain, no stools and no wind. You sound bad but not like that.

Original poster
HonestPenguin · 01/12/2025 08:24

@SpoonyKhakiHelper he seemed about 45. However, seemed quite new to NHS, saying people in this country are always requesting tests rather than feeling lucky can see a dr.

dont think its a blockage. When I had one before wasnt pooing or passing wind and looked 8 months pregnant with twins. With relentless vomitting. Will go to A&E if like that.

OP posts:
SpoonyKhakiHelper · 01/12/2025 07:22

Good God. Is he an older type? Anyway…. I’m no doctor but have heard that if vomiting starts it can signify a blockage, which can be serious. Some people here mentioned constipation already so that would figure. Please go to A&E. You’d be seen by a different doctor, if nothing else

Original poster
HonestPenguin · 01/12/2025 07:14

Thanks @SpoonyKhakiHelper so frustrated that was away that was away when first had the scan in A&E as they would have admitted if local hospital.

agree on gender. He said that endo is a trendy social media diagnosis. Surely resections only happen with significant disease.

OP posts:
SpoonyKhakiHelper · 01/12/2025 06:58

You poor thing. He'd have sent you to hospital already if you were a bloke. Please consider A&E

Original poster
HonestPenguin · 01/12/2025 06:48

feel so unwell not even sure will be able to WfH. Been up most of the night with toilet trips and vomiting. Not sure how to tell if another bug or if just the symptoms.

OP posts:
Original poster
HonestPenguin · 01/12/2025 02:27

@Bones101 what do you think inunologist should test for?t

OP posts:
Original poster
HonestPenguin · 01/12/2025 02:26

did not give a number for calproctectain. However dont really trust anything as said culture was normal but ignored campylabacta positive PCR. Presumably should be an explaination for the CT. Maybe it was a passing thing but dont understand how ok to only take on board results that agree with diagnosis.

it is so painful just woke me from sleep and have gone to the toilet but pain worse afterwards.

OP posts:
Bones101 · 01/12/2025 01:35

Forget about gastro. You need a promt referral to an immunologist for testing. Ask you gp to refer you.

WombatStewForTea · 30/11/2025 23:44

They said your calprotectin was normal but what was the number? I have IBD (small bowel Crohn's) and my calprotectin has never gone past 250 whereas others can have it well into the thousands.

My gastro said any inflammation is proof of IBD instead of IBS and that basically you can only diagnose IBS when you've ruled out everything else

Edited to add - I had colonoscopies, CT and MRIs that were all negative. I was finally diagnosed by the pill camera

Original poster
HonestPenguin · 30/11/2025 23:40

@InlandTaipan sorry to here you have IBD.

I asked if I could have a cigmoidoscopy so they could vissualise rectam and cigmoid where CT showed inflamitory stuff. Obviously cant. View the terminal ilium but prefer not to do a full colonoscopy prep. Also thought would show if a fishure or piles was causing pain opening bowels. He said that had had a normal colonoscopy in the past. I asked what explanation there was for CT. He said tests can be wrong I said presumably the colonoscopy could be wrong. I asked if symptoms dont improve with mebeverine would he consider further testing. He said you habve a diagnosis of IBS.

i asked if could have small bowel mri to see if it picks up adhesions from surgeries. He said only get adhesions from open surgery. I said had them from endo with out any surgery. He said no you have IBS bowel endo would not cause symptoms.

do you have pain relief that works?

OP posts:
Original poster
HonestPenguin · 30/11/2025 23:21

@SausageMonkey2 Obviously things could have changed since the scan but surely they would have reported loading if had been constipated. Instead it said inflamed terminal illium, cigmoid and rectum including bowel wall thickening.

when poo peeps out and goes back in doesnt need to be hard can bee soft but not liquid and pain of opening and pooh being in rectum makes it impossible to go

OP posts:
SausageMonkey2 · 30/11/2025 22:51

I read your post again. You’re constipated. Have a look at the ERIC website for help.

SausageMonkey2 · 30/11/2025 22:49

Oh and low appetite too suggests that you’re clogged to high heaven.

I also had a bowel resection for endo.

SausageMonkey2 · 30/11/2025 22:48

Everything you say in your post.

diarrhoea up to 20 times a day isn’t diarrhoea. It sounds like fecal overflow.

it sounds like you have referred pain into your hip from the constipation.

passing solid small bits but it
sneaking out and in again.

honestly - get yourself a box of movicol from the chemist. It will be a tenner. Take two a day for the next fortnight and see if anything gets better. Knock off the
mebervine as it can make constipation worse.

PoppySaidYesIKnow · 30/11/2025 22:34

Diverticular disease would fit. Have you had a colonoscopy? It sounds like constipation with overflow diarrhoea. I know it sounds counterproductive but I’d try laxido sachets for a few weeks and see if you can get back to normal size stool.

Original poster
HonestPenguin · 30/11/2025 22:30

@SausageMonkey2 what makes you think acutely constipated?

I have had a scan showing fecal loading in the asmall bowel but not large bowel. I have wondered whether surgical adhesions slow things down to lead to the watery with small hard lumps.

OP posts:
InlandTaipan · 30/11/2025 21:30

I have crohns and what you're describing sounds like crohns to me - so IBD not IBS (big difference).

Have you flat out asked the gastro to be tested for crohns? I'd be very interested in hearing their reasons for not doing so, ask then to commit their response to writing.

If you're getting nowhere with the consultant you can ask for a second opinion from another gastro or maybe complain to PALS.

A&E if you get to the point of not being able to eat, dehydration or too much pain. You can be admitted via a&e.

Sorry to say sometimes you have to keep fighting. My (useless) consultant tried to throw me off his service with a diagnosis of "general gastritis". When I fought that I then had to force him to refer me for a capsule endoscopy- 6 weeks after that 1 had my first bowel resection. Man was an utter self important dick who just ignored the evidence and wouldn't listen to a word I said.

Autumn1990 · 30/11/2025 21:27

I’ve UC and my calcoproctain isn’t particularly high ever, sometimes on the higher end of normal. Has the GP done the blood in stool test? I only got diagnosed due to the FIT test finding blood in the stool and being referred on the two week pathway.
Gastro have been absolutely useless for me though I did manage to get an iron transfusion which was great. There are more expensive iron tablets which are easier to absorb available on prescription but they’re expensive so hard to get.

SausageMonkey2 · 30/11/2025 21:27

I would bet money on you being acutely constipated rather than anything else.

Swipe left for the next trending thread