Rant needed

[Julie182]

Hello everyone.

I was referred to a gastroenterologist back in February 2024, and I'm still waiting. I understand that other people need priority, and covid caused a huge backlog, but I'm starting to get incredibly tired of waiting to see someone.

My issues started back in October 2023, when I had constant diarrhoea and really bad tummy pains, more towards the lower right side and my back. This lasted for about 7 months, then the diarrhoea did calm down slightly. I stopped dairy and really watched what I ate. Little and often. My bowel movements are still not normal, I get really bad indigestion, my tummy gurgles constantly, still have alot of tummy pain, feeling sick, tierdness and generally feel unwell most of the time.

My GP seems to think this is just a flare up of my IBS which I was diagnosed with back in 2011 but I can't help but believe there's something else going on.

I know there's a lot of people out there who are alot worse off them me but I can't help but feel incredibly lonely.

Many Thanks

[Luisa22]

I am sorry you are feeling like this, and sidelined by the doctors. One year and two months is an awful long time to wait for an appointment. I believe our heath service is falling apart and they don't care much about us any more. I heard of someone who had to wait three hours for an ambulance when they were having pretty bad cardiac symptoms about a year ago. That man is still alive, back home, going out for daily exercise with his wife and dog, and doing ok, by God's grace and some sort of miracle! He was indeed having a heart attack!!

Going through horrible experiences and getting no help or attention is a very lonely thing. I know. When my belly gets upset I often feel very much alone. My symptoms always come alongside a quite forlorn feeling too (serotonin in my body which is stuck in the "wrong place"?? I don't know. But it can make me want to cry sometimes and I feel very alone with a tummy that suddenly turns against me, which takes away at least 90% of quality of life when it happens.)

So I understand and send you my kind thoughts and a hug.

I am not sure how much reliance we can put on the NHS....which is a terribly sad thing to say. But something is dysfunctional. I am not buying Covid and backlog as an excuse. Something is fundamentally wrong.

To be fair, I have found NHS 111 to be helpful, but my last experience of that service was in winter 2022 (for something unrelated to IBS.)

All I can say is if you do have any savings, treat yourself to a private GI consultation. I haven't had one, but I have paid privately for homeopathic treatment (which actually did help me, and I am tons better than I used to be, even though it didn't bring me a "cure") I also take some herbal remedies which also help. All that hasn't cost me a fortune.

But what you need is a good assessment from a specialist, and tests if necessary.

You're not alone, anyway. Take care and best wishes.

[b1b1b1]

That kind of wait is appalling. One thing, though, I wonder if the appointment request could have gotten lost.

[Luisa22 in reply to b1b1b1]

Oh yes...that can and does happen sometimes. It happened to my auntie.

[meadfoot]

Please contact the gastroenterology department and plead your case. You could have been lost in the system. It can and does happen unfortunately. Remind them you are there or you could be waiting forever. Make it a priority to ring, ring and ring again if you dont get through first time. Persistence may well get you seen. Your wait is unacceptabie.

[Mrdd]

hi there Julie have you been tested for celiac disease if not get the gp to do a blood test or try removing all gluten from your diet for a while and see how you go

[Julie182 in reply to Mrdd]

I was tested for celiac disease which was negative. My symptoms started to get better when I put myself on a diet which mainly contained carbs, like toast or soup with bread. I did cut out near enough everything else. Cutting out gluten will be the next step as I'm still having major problems. Thank you.

[Mrdd in reply to Julie182]

I had negative blood test I think but positive biopsy

[Whynotthis]

I would seek confirmation from your GP that they have in fact referred you. If they have, ask if they can possible expedite the apt. As your symptoms have worsened ( if they have)

[Julie182]

Thank you everyone for your messages.

The hospital have definitely received my referral as I can see it on my NHS App. 2 referrals were sent. 1 in February and a more urgent 1 in August. I did call them last week and they said i would get an appointment soon but they couldn't tell me how soon. And I basically had to be patient and wait.

But it's getting to the point now where I'm wondering whether it would be better to go private. I have enquired about cost and I'm waiting to hear back. I will more then likely won't be able to afford it anyway but just thought I would enquire.

[xjrs in reply to Julie182]

I went private initially to cut the wait time. If you find a private gastro you like the credentials of (especially if one of their specialsims or interests is IBS), make sure they serve both private and the NHS. I got my initial consultation privately, to speed things up. When he suggested a scan, I then switched to the NHS with the same consultant. This meant I had the scan and the follow up appointments with the NHS. There was a bit of a kerfuffle when I transferred to the NHS, since they kept trying to set me up with an initial appointment again and they didn't seem to get the fact that I'd had this already and I just wanted the referral for the scan and the follow up appointments, but we got there in the end.

In the mean time, you may want to work through the information on this website, if you haven't seen it already.

ibsresearcher.com/

Good luck.

[Julie182 in reply to xjrs]

Thank you so much for this information.I didn't realise you could have an initial consultation privately then switch to NHS. I assumed that once you had committed to go private for the issue, you would have to go ahead with tests and treatments privately.

[iloveglee in reply to Julie182]

I have had private consultations on a few occasions. He determined the problem then put me on his NHS waiting list for treatment. So I only effectively joined a waiting list once. It was a few years ago and the consultation cost £250. It’ll be more now I expect.

[Prance]

If you still haven't got a date contact the hospital's PALS person and lay it on thick. They should take it up for you. I've done this a number of times and always got a satisfactory outcome.

[Viklou]

I would get up to date stool samples done for both FOC, calprotectin and infection as these may help expedite your referral. My stool samples were alway positive for calprotectin but never actually had one done until I saw the gastro. This was pre covid and it took years yo get a formal diagnosis, which I knew was more than IBS. You have to keep pushing to help yourself. I did go private to get another opinion as I'd lost so much weight. It was about 5 stone in 6 months. Yes I had it to lose but not in the way I was afflicted.

Good luck and keep pushing for answers

[Dollymae06]

I am exactly the same Julie182 but I have fecal accidents now aswell. I've been like this since January 2024 and had no tests I now have appointment with Colorectal Surgeon in August 2025 I have had to fight for this appointment. I am hoping it is only my IBS and not anything serious. X

[Boxroad]

I was referred back to gastroenterology in 2022 i had a colonoscopy then had to to give bloods three times for them I never once saw anyone face to face, I had three face to face appointment cancelled by gaestro, when I chased up my blood results I was told they were still in admins pile of papers on her desk two months after I gave then even tho in one of phone calls they wanted bloods doing urgent and I had to phone the gastroenterologist PA to tell her I had had them done. I had two phone call the first in 2022 the second march 2025 to se how I was, when I said not as bad as I was she then discharged me back to my GP.

I am in Essex area