Feeling dispare at lack of help from gastro

[HonestPenguin]

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.

My endo caused havoc with my GI system and I just had my second surgery which sadly hasn’t resolved any of it. I was then diagnosed by colonoscopy with Ulcerative Colitis also. The issues fully emptying sounds like pelvic floor dysfunction and a rectocele!! And like you have nasty internal and external piles also. I’d be very concerned the campylobacter hasn’t actually cleared and they must test you again! Get tested for c diff also as I got this after antibiotics and symptoms were as awful as you describe and took months to clear and years to rebuild my gut flora. I take colestipol now which is a bile acid binder that helps as my gallbladder doesn’t function correctly.

Sorry HAVE YOU NOT HAD A COLONOSCOPY or repeat pathogen test? Your drs are idiots 😭

yes have had endo show twice in other surgeries but symptoms have been managable.

I take alflorex probiotic. Gastro said know evidence of benefit.

After the resection for endo had a period of time on cholastiramine for bial acid but stopped after a couple of months when things normalised.

had a colonoscopy 18 months ago but no inflamitory stuff found.

GP strongly suspects Crohns but obviously with gastro saying IBS not sure if that will change.

Ask your GP to refer you for a second opinion, ie a referral to a different consultant, or preferably a different hospital. Break down and sob at your GPs. As long as you are quiet and co-operative nothing will happen. If you can afford it, see a consultant privately, as it will be quicker.

How desperate are you? There is some and growing evidence that an extremely restrictive diet can put IBD/IBS into remission.
It is very restrictive, so not for everyone, but if you are interested take a look at the this discussion, Carnivore Diet for Inflammatory Bowel Disease: New Source of Hope? With Nick Norwitz, PhD

i am trying to get a private appointment through health insureance but not sure how long will take. I just feel so ill! Was on holiday when had ct scan and they said in A&E would have admitted had Ui lived in area.

think would beprepared to do an ultra rextrictive diet but would prefer a diagnosis first

Have you been checked for celiac disease too?

Can going back on the bike acid meds be an option and demand your GP does a stool pathogen test again. It’s absolutely not acceptable the Gastro is saying IBS based on severity of symptoms and without doing any bloody tests!!

Mebeverine works great for me along side Loperamide (None branded Imodium)

Have you looked into your diet? Tried eliminating foods? I had to go dairy free.

Write what you have written here in a letter addressed to the Medical Director at your Hospital and your GP, requesting a review of your treatment and an action plan to diagnose and address the issues. Copy it to your MP. A registered letter, resonates more than an email I find.

Have you had a fecal calprotectin test? It's how I was diagnosed with Ulcerative colitis, after 2 years of symptoms. Although I guess if your colonoscopy showed no Inflammatory tissue it might not be that. I would caution against restricted diets without medical advice, I tied myself in knots for years trying to figure out if what I ate was to blame before accepting that I have an autoimmune disease that I'm not to blame for. Good luck, having such chronic bowel issues is so hard, I found being honest about my symptoms with a small group of trusted friends really helpful x

celiac blood tests normal 10 years ago and normal endoscopy 18 months ago.

have been told not to take loperimide until there is a diagnosis. Medics in A&E were convinced its Crohns but as not inarea asked GP to refer for within 5 day assessment by IBD clinic but to months later had appointment with gastro on friday.

gastro says calcoproctain normal but on app says sample not processed.

GP said needed to ask gastro about bial acid diarrhea as rthey cant prescribe. Gastro said not enough bowel removed

Iron tablets are notoriously tricky to take.

no comment on the wider picture - although I had endo on my bowel and it caused problems including pain - but try liquid iron. I found spatone useful.

thanks @Octavia64 sorry to hear you had problems with endo too.

I was prescribed liquid iron when couldn’t tollerate tablets. It didnt make any diference unfortunately. Still doubled over 3 to 4 hours after taking and severe pain for more than a day. GP thinks its chemically irritating end of small bowel where scan showed inflamation.

Not sure how i am going to work next week have speant weekend in bed in agony. Have only managed to eat a boiled egg, half a jam sandwich, too table spoons of greek yogurt and a tiny amount of risotto rice with chicken.

at what point is A&E appropriate?

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

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.

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.

@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.

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.

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.

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

I also had a bowel resection for endo.

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

@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

@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?