5 month waiting time to see specialist. Absolu... - IBS Network

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5 month waiting time to see specialist. Absolutely cannot wait that long.

Sheisun profile image
14 Replies

For about 5 months now I've been having mild gastrointestinal issues (indigestion, feeling full quicker than normal, mild bloating, loose stools but not diarrhoea) which I am convinced was caused by stress and anxiety. About a month and a half ago, these symptoms rapidly worsened. I started getting horrible cramps, I felt sick to my stomach every time I ate, I was horribly bloated. I saw the GP, prescribed mebeverine and lansoprazole with the suspicion of IBS and ordered a calprotectin test (came back as 149). Mebeverine helped with the cramps, the lansoprazole hasn't helped much. I still feel sick (drinking water is enough to cause discomfort), I'm able to eat maybe less than half of my normal portions, straight after eating my stomach feels very bloated it feels like my stomach can't stretch to accommodate the food, I rarely feel hungry, I'm losing weight because I don't eat enough, I feel tired and lethargic all the time, and I get pains in my upper left quadrant, the only area which the mebeverine hasn't helped. Stools are still loose and tend to be quite yellow.

GP referred me to gastroenterologist, and today I found out that my appointment is on the 9TH OF MARCH. ARE THESE PEOPLE INSANE. I cannot wait that long, I can't function properly when I feel terrible (and incredibly stressed because of this too) on a daily basis and I have no idea what is actually wrong with me and the GPs have no clue either.

The NHS website states "The maximum waiting time for non-urgent consultant-led treatments is 18 weeks" but I don't need treatment, I need a DIAGNOSIS. I shouldn't have to wait 5 bloody months for a 30 minute consultation.

Now I want to know if there is any way of speeding this process up, or if there is anything else that I can do. Apparently the only way to get there quicker is to be suspected of cancer which is a bit extreme. (Note: since bloating and feeling full quick are symptoms of ovarian cancer, I asked the GP for a CA125 test but they said its not needed because I'm only 21). They've also found no infections from a stool sample, but then again I don't know what infections they were looking for.

I just want answers. I just want to feel well. Right now it feels like this is too much to ask from the NHS.

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Sheisun profile image
Sheisun
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14 Replies
FRreedman profile image
FRreedman

The only way to circumvent the long wait, for an initial appointment, is to pay approximately £200, and see a consultant privately, for an initial consultation, tell him, upfront, you can't afford to see him privately, and ask if he can put you on his NHS list for all future appointments. This is a lot more common than you think.

MissEd profile image
MissEd

Unfortunately i dont think this is uncommon. I started having issues in feb 2017, eventually referred in sept 17 for appoint in jan 18. Which was a waste of time as he just said take charcoal tablets for the gas!

Nuttycatlady profile image
Nuttycatlady

Being only 21 is not a reason for not being allowed to have an ovarian scan, a friend of my daughter died in her late twenties. Try another GP in your practice to see if they will push for the date with the consultant being bought forward, maybe if there's a cancellation if you are able to be flexible. Good luck !

BabsyWabsy profile image
BabsyWabsy

I have put this on here before, and quite recently. You have a choice of where to go. I was given a choice of 3 NHS hospitals, all with 30+ weeks waiting lists or a Nuffield with a few weeks waiting list funded by NHS. Of course, I picked the Nuffield because it was by far the shortest. My son had a similar experience and was seen at a private clinic within a couple of weeks. It is certainly worth asking if you can do this. I think they prefer not to let patients know they have a choice and can pick where they want to go. Might be an idea to take someone with you to support when you ask for this.

asbayford profile image
asbayford

Mine got sped up because I was drastically losing weight, I was seen within 2 weeks on an urgent referral simply because of the weightloss. By the sounds of it you're losing a lot of weight too so I would go back and ask for an urgent on this basis x

Sheisun profile image
Sheisun in reply to asbayford

My weight loss isn't rapid but every time I weigh myself it is always lower by half a kilo or so. I started to willingly lose weight and once I lost 8kg I was happy, but then I started getting symptoms and started to lose more and more. I'd say I lost around 5kg since July. I'll keep monitoring my weight.

claire_louise profile image
claire_louise in reply to Sheisun

Did you change your diet to lose the weight initially? There could be a trigger there. It seems quite coincidental that you started feeling poorly straight after the weight loss.

Sheisun profile image
Sheisun in reply to claire_louise

Not really. I just ate smaller portions of my normal meals, baked rather than fried, avoided sugar, didn't eat fast food, things like that. Other than that, I ate everything I ate before. I also used Slimfast shakes but not for long since they didn't really work for me.

claire_louise profile image
claire_louise in reply to Sheisun

Cutting portion sizes could be a factor as your stomach shrinks so you end up feeling very full very quickly. Also you're likely to be more gassy if you're hungry. It might be worth getting some tests done though - food intolerance tests like the York Labs one can be helpful.

DippyDame profile image
DippyDame

No consolation...but I eventually had a 5 month wait....unlike you I didn't have an appointment date. I called the consultant's secretary after 3 months ...no joy. After 4 months my GP wrote to the consultant and shortly afterwards I was offered an appointment....may have been coincidence!

It may have been better if your GP had referred you for a colonoscopy or a CT colonography (I've had both) rather than a consultation. My GP wanted to eliminate the possibility of cancer....turned out to be diverticular disease.

I've had two CA125 tests for reasons similar to yours....both clear.

I'm not medically trained but it is possible that a combination of stress and IBS is the problem

Gut problems are horrible....I've just been told by my GP to eat lots of fibre and drink plenty fluids.... he kindly informed me it could take weeks to resolve. Grrrrrrr! I've already had nine months of this!

No meds offered by GP but my pharmacist suggested Fybogel Mebeverine which I start today....sounds promising.

I've come to the conclusion that so long as you can breath and walk the NHS is in no rush to help.

Good luck!

Sheisun profile image
Sheisun in reply to DippyDame

Oh I am fully aware that its most likely caused by stress. Thing is, not having a definitive diagnosis, feeling sick all the time, the effect it has on my life and the fact that I have to endure months of this causes me so much more stress and and anxiety which is really not helping my condition.

DippyDame profile image
DippyDame in reply to Sheisun

OK.....hope you get help soon. I sense stress in the tone of your response which is why I write further!

I've just had a look at your profile and you have already been given some very good advice.

I fear you are looking for a quick-fix which is unlikely to happen so you need to accept that and adopt a more positive approach instead of rejecting every suggestion that requires some effort - been there!

A positive approach will go a long way to easing your stress.

I realise this may sound blunt, harsh even, but at 74 and having had much life experience (including life as a student) I learned that "the buck stops with you". I suggest you take on board tha advice offered....including the FODMAP diet which has helped my DIL recover, albeit slowly, from a serious bowel condition

Student life is challenging both on the personal and educational fronts ....suddenly you have important decisions to make often when far away from home - a build up of stress and anxiety frequently follow, sometimes before you realise what has been happening.

How you deal with that stress is significant and it looks as if you have already self diagnosed when you say, "I am fully aware that its most likely caused by stress." The gut issues are most likely the result not the cause of your distress.

Try and address the cause, perhaps have a chat with your university's councillor.

I hope you are not offended by my remarks and that you will soon be back on track and feeling better

Best...

DD

I was referred in March 2019..... still waiting. I was told that Gastroenterology has the longest waiting lists. Been feeling like poo for a year now. All the same symptoms as yourself. GP appointments are hard to get too. Waiting 2 weeks to see GP after writing him a letter and handing it in yesterday 😕. I also have constant 24/7 abdominal pain. Literally all the time so am taking the max amount of painkillers 😕.

I paid for a private consultation and as I was a self funder the Consultant got me an urgent colonoscopy on the NHS within 2 weeks of the consultation. I paid for a follow up consultation privately afterwards and got more tests done on NHS. All this has been done before my original NHS referral appointment came through. It cost me £150 and £80 but well worth it!

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