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Ibs - feel as though I can’t carry on

136 replies

lostandfound55 · 01/10/2020 11:01

Sorry for the long post.

I’ve been struggling for the last few months. GP advises ibs and nothing they can do but I don’t know how to carry on feeling like this.

Everyday I wake up to a gurgling stomach and have to rush to use the bathroom. Then all morning I feel the need to go again sometimes I do go other times I don’t. This means that I never leave the house in the morning as I don’t know whether or not I’ll need to go and to be honest I feel so bad all the time I really only go out twice a week and that is only to go and buy food. I never go anywhere else now.

As the day goes along I then get trapped wind and stomach pain etc which continues until I go to bed then it all starts again the next day for the last 3 months this is continuous with no give up.

Today is bad as I am having diarreah all morning.

Things I have tried:

Gp- prescribed mebeverine - advised classic ibs and I don’t need any other help from them.

Private gastroenterologist - waste of time really as can’t afford the private colonoscopy. They got the details wrong in the letter afterwards such as wrong symptoms written etc.

Dietitian - lowfodmap diet and elimination diet.

I’m still the same after all of this - I don’t know what to do and can’t carry on like this. I want my life back.

OP posts:
lostandfound55 · 02/10/2020 14:27

@time4anothername and pp’s thank you. I have just emailed the consultants secretary noting the discrepancies.

OP posts:
jsp56 · 02/10/2020 15:11

That's interesting lostandfound55. I think with me I wondered that, as it also correlates closely with my period coming on, which might be a sign that it is stress-related.

In your case is there any variation over the month at all, or has it been the same every day for several months? (sorry, none of my business if you don't want to say - I'm just wondering if we are in the same boat in that respect.)

It's such an utter nuisance isn't it? I'm in a rough spot just now and approaching one and half stone underweight, having been pretty good last week. Bit fed up.

On the plus side I've been watching hilarious videos on youtube, taking the mickey out of politics, so I feel very jolly on the back of that.

lostandfound55 · 02/10/2020 15:22

I don’t mind you asking at all.

For me I have found my symptoms are consistent every day and don’t seem to have any correlation with my period. However my period was late by 5 days this month when I am usually very regular.

Luckily for me I was overweight to begin with so had the weight to loose. Except one thing I can’t understand is even though I have lost 2 stone the same clothes still fit my stomach and sometimes feel tight. I am guessing this must be down to bloating.

OP posts:
time4anothername · 02/10/2020 15:33

late onset IBS with weight gain on the stomach area is a sign that you should have ovaries checked - have you had any gynae investigations?

lostandfound55 · 02/10/2020 15:38

No I haven’t had any gynae investigations.

I have had ibs symptoms before now however I have only ever been to the dr once in my early twenties about it. I usually just eat something then need to rush to the toilet and that is it. No pain, no bloating or wind etc like now.

OP posts:
jsp56 · 02/10/2020 16:21

That's interesting that it's the same every day. We must have something different then. Digestion seems to be quite complicated.

lostandfound55 · 02/10/2020 16:30

@jsp56 I’m not sure. If it is ibs then you can be affected everyday or not so it could be the same I think.

OP posts:
jsp56 · 02/10/2020 16:38

Yes I suppose so. I hadn't thought of that. That book by John Hunter is really interesting if you have a minute for a read. It categorises IBS into four distinct conditions and gives a lot of quite detailed information on them. I'd be interested to know what you think if you get time for a read.

lostandfound55 · 02/10/2020 16:41

@jsp56 I’ll have a look, I have also brought the Dr Rossi book also to read.

OP posts:
jsp56 · 02/10/2020 16:51

That looks good. I'd be interested to hear what you think of it. I'm on a very restricted diet, so I might not buy it just yet until I hear your thoughts, as it seems to be a lot about recipies, which I probably couldn't get near anyway.

lostandfound55 · 02/10/2020 17:53

@jsp56 well I have brought the book you recommended on my kindle and taken the questionnaires and it is suggesting that I have malfermentation and ibs. It is the low fibre diet that other posters have mentioned that is recommended for me to try.

The problem that I have looking at the food is that my dietician has excluded a lot of the food you can eat from my diet in the elimination diet we are doing that i am unsure if I would be able to do it until I have reintroduced food types with the dietitian.

OP posts:
Veterinari · 03/10/2020 06:40

Op you need medical investigations
You could have coeliac, bike acid malabsorption or a host of other things.

Is is a diagnosis of exclusion so unless you've been examined blood tested and scoped/biopsied, then focus on getting that (gp second opinion) rather than managing a condition which you may or may not have.

If it is ins then low dose amytriptilline or other meds may be helpful but a gastro referral is necessary

GoldenNCurly · 03/10/2020 08:35

I am having similar issues, diarrhea, gurgling and bloated stomach which has been going on for the past two months. I put it down to stress but find the symptoms are worsening and I'm going to the toilet 6-7 times a day and almost immediately after I've eaten.
When I phone the doctors they saw me within the hour, I've been booked in for blood tests and they want two samples of stools.
I was prescribed some medication (cant remember what it is called, but it is used to treat ibs).
I was worried the GP would just pass it off as dietry issue as I am mid-twenties but the doctor seems to be really on the ball.
I think you should definitely push for further testing

lostandfound55 · 03/10/2020 09:08

Thanks both, I have contacted my drs again and have been advised will get a call back next week.

OP posts:
jsp56 · 03/10/2020 18:15

That's great that they were so helpful GoldenNCurly. I got the same, booked for next week.

Good luck lostandfound55. I think the thing that you need to emphasise is that it's continuous, it's been a long time, and that you are losing weight without meaning to. Those are the red flag symptoms and should result in tests. Good luck.

CrepuscularCritter · 03/10/2020 18:29

If you were off gluten when you had your blood test, it may not have revealed coeliac disease. While I'm not suggesting you go back on it to have a test again, there's still a possibility that it could be the problem. I dont know how the blood test fits in with your timescale for cutting out gluten.

Also, when gluten damages the villi in your digestive tract, it can make you lactose intolerant. I only found out I was coeliac when my gut was so damaged that any lactose went straight through me. Once the gut repairs itself after gluten is eliminated, lactose intolerance may disappear. It didn't for me, but it does for the majority of people.

I hope you find a diagnosis and treatment, aa your current situation sounds so miserable.

lostandfound55 · 03/10/2020 19:30

@CrepuscularCritter thank you. I had only not been eating gluten for 2 days when I went for the blood test so the nurse told me that she thought this would show up anything.

OP posts:
lostandfound55 · 03/10/2020 19:31

@jsp56 thank you, let’s hope so.

OP posts:
lostandfound55 · 05/10/2020 11:18

I have spoken to the gp and I have been given a referral and extra blood tests for ovarian cancer and thyroid. They have advised it is unlikely I will be seen this year at the hospital.

OP posts:
jsp56 · 05/10/2020 14:47

Well done lostandfound55 for having that conversation, and for getting your referral and blood tests. That is really good.

Once the blood test results come back you should get a much better idea of what is wrong and then you can start thinking about what to do about it.

If they find something serious I think your hospital referral will happen much more quickly. It's just if the blood tests rule out all the serious stuff that you have to wait longer I think.

You also have the option of requesting a private referral to a gastroenterologist to get you started sooner if you have the money and would want to do that. I did that a few years ago and learned a lot about managing my condition that way.

Well done there, good luck and keep going!

I went and had my blood tests today. (also keeping going :-))

lostandfound55 · 05/10/2020 17:41

@jsp56 thank you.

I have just also received an email from the dietician I have been seeing. She has advised that as diet has not worked I need an urgent referral to gastro. She has advised extra things need ruling out such as bile acid malabsorption and enzyme insufficiency etc. I know my gp won’t do an urgent referral as speaking to them today they said they would do the referral but didn’t believe I needed one. I’ll wait for the blood test results and take it from there I guess.

Hope you are doing ok today.

OP posts:
newtb · 06/10/2020 09:16

Hi again

Here's a tip, worth a try. Try and get into the headspace that you're helping a very dear friend that's being shafted by the system.

Then take several photocopies of the specialist's crappy letter.

Then get your pretty highlighters out, and dissect the letter.
Read it calmly have a stiff drink if need be. You've got say 15 copies, the original safely in a poly pocket away from tears, snot, even dare I say it, shit. I'm trying to help you even with black humour. I bit my tongue in half when dd had the problem not to say 'OK, now who can't do anything but shit themselves, eh?' However this isn't about me.
However, imagine in the future seeing the GP, and them having access to a colonoscopy denied. Bet you any money you like hell would've frozen if they'd ever be in that position, and if they did there's probably a charity that'd fund it.
So, not a bad revenge fantasy. Sod fantasy, sod it, I'd do it, but back to business.
Brace yourself
Take a copy of their sodding unprofessional crappy not even worth wiping your arse on letter. I have a toilet roll in the box between the front seats, for cd's other hidden goodies, just in case. For me that's a bog roll. Shrugs. And a box/pack of kandoo-type wipes in the boot, just in case. There may even be a roll of bin bags, you never know when disaster can strike. Public toilets out of paper etc etc

Anyway. You've got a pot of coffee, favourite music, white noise, grounding tape - not relaxation the exact opposite the sound of their voice grates, keeps the nasty shit-provoking adrenaline away, keeps you centred on
What you can see, feel the nice cushion, the favourite pen, taste - a nice glass of wine that you sip from, a square of your favorite chocolate, smell - a squirt of your best/most favourite perfume say on the inside of your wrist of your non-writing hand - then all you need to do, lift your hand to your nose, breathe in the smell from your wrist and your back in grounded space. Then, once you know you can ground yourself put your favorite music on. Focus on hearing using your ears so we've got

Touch - tuck your teddy bear in next to you, keep him/her safe. Just had to rescue mine from a basket above my head from when I changed the bed and forgot him. It's something tactile
A slanket to keep you snuggly if needs be.
A small square of your favorite, but cheap decent chocolate, even lidl/aldi do some really decent ones at about £1.50 for 10 squares. Thin, but means they're cheaper, but they're so good they last ages as you can 4 in a cupboard as you're worth it, to spoil yourself. Let it melt slowly on your tongue whatever helps you feel the sensation of it melting
Taste - sorted drink, choc which does both taste and touch
Hearing - music covered
Smell - done
See - your favourite pen in your hand, also covered by touch

Right that's all 5 senses covered.

If the grounding gets really difficult get a cringe worthy piece of dance music from your youth, close the curtains and have a 5 minute break. Bop around the room like a loony if that floats your boat. It's very physical
Energetic sex works as does
Drumming your feet on the floor as hard as you can - think terrible two's type heel drumming tantrums in fact even that - imagine treading grapes, the bastard GP's testicles that you're crushing to destruction that you've just cut off, wearing rubber gloves, with a rusty razor blade, Olympic speed sprint home, to sit there and drum into smithereens or
The drum solo 'Toad' by Cream, Ginger Baker, as gifted a drummer as Eric Clapton on guitars. Before my time but indoctrinated into DH's musical taste, however it's a classic. Don't know how he wrote it, or ever performed it more than once. He must have been drained from the sheer physical activity

Take you pen, pad of paper, and like decrypting/analysing a job advert to determine all the unspoken requirements to work.
The first part is to determine all the errors even professional misconduct ones. Those are to be put them aside for later. Plenty of time to dob them in to whichever fancy club gets their annual subs. For the moment you want them earning the money they stole from you.

So take your pen and find the first word that hits you circle it, Your first theme, as you read you'll notice others, underline the key word, it's for later. Take a blank copy, write the header 'theme 1 xxx' whatever. Now, 'chain' together all the words that seem to fit this, so there like beads on string like a necklace, bright oblong chunky wooden ones. As if you've got a box and your picking out you favourite beads shape or colour, but not both, to make a necklace. You could even number them in pencil. With the design of the 'necklace' in your head, you can then go to the theme page and trace out your theme word ie circle words in their order as best you can. Phew first one done. Wasn't so bad, take a break, you've earned it.

Then once all done, put it to one side, you've identified your basic facts. Ever done report writing? A tip I had was to take an A3 sheet of paper, write the sections down the side. From memory, each section had similar types of data, just a question of sorting it. I dithered for 3 days. By section? No, by action required? No by how it could be backed up by hard fact? No. My boss let me panic. Eventually the need of the job for this report to be written, overcame his dislike for me and his jealousy that he couldn't have found all the facts.
So, the sections of the report ie themes down the side, the actions required along the top, a column for each action. Slot all the 'facts' into the right row/column. Leave it. Your subsconscience is tunneling away, from when you started. Run a bath using some favourite bubble bath, whatever. When you feel ready. Have a look at the 'grid'. You can't change the action required, it follows on from the fact but, you can if it's a better 'fit' to another section/theme shove it up or down the grid. So, circle it with an arrow showing where it should have been. Use postit notes, cut and paste - that works in an office, you take a copy of version1, keep the original, then literally get the scissors out and cut up the document. There will be some themes unchanged, maybe some actions. Quick slice across, pritt stick, a whole theme, done. Quick slice down, an action, and with each slice of the scissors, each 'cut' literally it's getting better. It's your support document. It's what works best for you. Cut the other squares out, stick them in place. Step back, does it work?

If not take a copy etc etc you're on a roll, original version 2 etc

Very last step, honestly
Order the themes?
Wait for risk to health for the last one it's the sucker punch for the para beginning 'finally, I completely understand that your only concern is the correct diagnosis and appropriate treatment plan in the interest of all your patients and so grateful etc' bollocks. The subtext you and I know you've dropped a bollock, a big one, and, you should be struck off for misconduct and made to pay so much in damages that even your 5th gt grandchildren will be paying it off. They know full, that any indemnity insurance will only pay out if, and only if they' d followed the rules. Well, they might pay once, but never again. They'd have to self-insure, impossible, illegal and unaffordable. It'd be £10k for a 5 min appointment.

So, you've got the opening para please would you clarify the factual errors that you were very surprised to see from such a professional ubderstanding consultant etc In other words, he walks on water, his typist should take the blame for the errors however, there are certain factual errors as detailed below

Slot in your themes in order. Literally, put the most serious one at the bottom, it's the killer punch. Left of the themes, 'tick' off the most important. Write that paragraph. Look again, which is the most important one left, write the paragraph 'tick'. For the moment keep them on separate pieces of paper.

Finally, put the intro grovelling one at the top.
Killer one at the bottom
Others in-between in the order decided.
Break time
Read it through as a letter.
Tweak a word here and there.

Produce final version. Print, handwrite on best paper.

Personally, I like both right and left justified margins. Sometimes the last partial line needs to be left only. Nothing looks worse than 15 spaces between each word, when there are only 3 words in the line.

Page footer on it, I like page 1/n at the bottom right corner, date and document path/filename for my personal approach on a letter/document. I'd be tempted to call the file something like 'letter1' maybe too chancy, implies that you've already written the threatening one to the boys' club setting out the grounds for misconduct claim. Letter there's only 1, letter1 implies there's another waiting. Bit like debt collection, the escalating threat that ends up with the court bailiffs on the doorstep. But in reverse.

Leave it. Sleep on it.

Next day, fold in 3 if not too bulky for a standard envelope. Otherwise buy 1 A4 envelope to keep it flat, 1 B5 white one to fold in half.
Recorded delivery. They know and you know when it was posted. And delivered.
You can always write no 2, after 3 weeks surprised not to have had a reply, but considering.... you'd have thought..... understanding any extenuating circumstances, however you realky need the revised letter for your GP to take the correct action, and you feel it would not be unreasonable to have had a response as it's only a couple of little tweaks to an existing letter. You could even phone saying this. Depends if you can manage not to snort with laughter. Or, if you can do it without getting upset, that you'd really like to go for private diagnostic tests but not practical, but wouldn't hesitate to recommend them to friends/family as appropriate. Not a lie, not diffamatory, all depends what you read into it. ;—)

Any questions please pm me. I mn on the app and have a pending court case, final divorce judgement due in 8 days, and cross-eyed with pain from hip to knee with bursitis. I don't want to take Tramadol waste of time, need a magnétiseur to draw the heat off.
If you pm me, I'll at least get an email and it will keep floating up to the top. And a life-changing meeting next week.

Take care

jsp56 · 06/10/2020 10:20

lostandfound55 it sounds as thought a private referral to a gastroenterologist might be a very good idea. If you don't have health insurance then you don't need a referral letter I don't thing. If you are just going to pay for it then you can phone your nearest bupa hospital and request a self-funded appointment. You'd very likely get one within four weeks.

If you can't afford the further treatment then you could at least get a sensible letter from the specialist which might trigger better treatment from the NHS.

While you are waiting, it would be a very good idea to keep reading Dr John Hunter's books so you are armed with the correct vocabulary.

jsp56 · 06/10/2020 10:37

Hi, I just realised that you had already been round the private route. I'm really sorry, I forgot about that part.

I wondered - did you see a different GP this time or was it the same one that was a bit more helpful. (Just wondering by the way, please free to ignore me if you'd rather keep it private)

ReeseWitherknife · 07/10/2020 09:09

I have very similar symptoms to you op. How old are you? I’ve had IBS type symptoms on/off for over 20 years but the last couple of years have been awful, almost constant gurgling, gas, wind, indigestion etc. Two NHS gastroenterologists weren’t at all interested. I ended up paying privately to see another and she agreed to a colonoscopy and gastroscope due to my age (47). At £3000 I couldn’t afford the procedure privately so was lucky to be referred to the NHS for it. I had that last summer and a ct scan with contrast, everything ok but sadly I am still suffering greatly. The NHS gastroenterologist didn’t want to know once he concluded the tests were clear so I am back to square one, told me there was nothing he could do for me!
Hopefully, now that the dietician is on board you will get the tests you need via the NHS but if not could you possibly pay again to see a private gastroenterologist, maybe a different one and ask to be referred back to the NHS for a colonoscopy and gastroscope? Can I also mention that you need to be consuming gluten if you have a biopsy to check for coeliac disease (which is one of the biopsies they will take during a gastroscope), going gluten free will give a false negative unfortunately.
In the meantime there is great support on Facebook groups. I am a member of the IBS Support (Official) and IBS Supoort Group UK. I would definitely recommend them.
Also Professor Peter Whorwell books are great, he is the UK leading gastroenterologist for IBS.
Hope you get some answers soon, gut issues are absolutely drain the life out of you and it’s hard to get people to understand just how horrendous they can be and the impact it has on day to day living. Good luck.