8 months waiting to not be given a diagnosis...?

[kiisa]

Hi there.

I wrote on here a few months ago now... I had a battle with my GP and finally got referred to a gastroenterologist who sent me for a colonoscopy, MRI scan and calprotectin stool test... I initially thought I had IBS, but wondered if I could possibly have Crohn's disease...

I fought so hard to get a referral and apparently all of my tests have come back normal. The doctor wrote there was "no signs of IBS and no evidence of IBD".

Yet... I still have an extremely localised pain in the middle right of my abdomen near my belly button which comes and goes, but I have it most days. Sometimes it's very, very intense, like someone is stabbing me over and over again. Sometimes it's a gnawing, burning pain.

I have diarrhoea which comes and goes in bouts, I'll have a week where I have diarrhoea every single day, multiple times a day. Then I'll have days where I have no diarrhoea, but my bowel movements are quite soft. I rarely have "normal" bowel movements. When I have diarrhoea, it's a very URGENT need to go to the toilet - I can't hold it. I also sometimes have visible mucus in my stool.

My diarrhoea is more apparent after eating, but sometimes I have it randomly. I get very intense cramps after eating, to which I was prescribed Mebeverine - but it didn't really help. Buscopan does not help either.

I'm always extremely tired, no matter how much I sleep. I was diagnosed with a B12 deficiency and I had 6 B12 injections in 2 weeks, and they retested my B12 after this and it was only very slightly in the normal range (I would've thought it would've been sky high from the injections!). My doctor did suspect Crohn's disease because of my B12 deficiency as B12 is absorbed in the terminal ileum (common site of Crohn's).

I suffer a lot from headaches and migraines (sometimes probably because of the amount of diarrhoea, dehydrating me).

I'm now at a loss... I don't know what to think anymore. The GP has been told to "treat me symptomatically" meaning to treat my pain, diarrhoea and cramps etc... So, what am I supposed to do? Eat painkillers and Imodium every day? I have days where I can't even get off the toilet or move from my bed, so I can't make it into work. Surely, this can't be nothing???

I'm wondering, especially the people who have been diagnosed with Crohn's, is it possible to miss Crohn's on a MRI scan? I thought MRI scans were supposed to be the "gold standard" of diagnosing this kind of IBD.

I know it sounds bad, but I'd rather be diagnosed with SOMETHING, so then I can work out what I need to do to prevent, or if there's any specific medications I can take... But, to be told nothing after 8 months, I want to cry, because my symptoms haven't gone away, they've gotten worse!

I have a follow up appointment in February with the consultant... what should I say to him? Can someone have localised abdominal pain and diarrhoea for no apparent reason?

TLDR: no diagnosis after 8 months... can Crohn's disease be missed on an MRI scan? How long did it take for you to be diagnosed? What should I do next?

[Viklou]

Yep welcome to my world xxx. Did you ever get your calprotectin tested and have you had an MRI

[kiisa in reply to Viklou]

Hiya, thanks for replying. I had the calprotectin test, I’m assuming it came back clear as they didn’t mention it, or they have lost it.... so I’m not really sure. I had MRI scan they said it came back clear.

[Viklou in reply to kiisa]

You need to see what it was. Even for a base point. You may find you get worse or you could get a bit better and flare ups further apart.

I know how it feels to have stuff coming out of both ends then collapsing on the bathroom floor with your pants round your ankles in pain and dripping in sweat. Not nice and thankfully this doesn't happen often. A low level of pain is now a new normal but the flares can be very nasty

[kiisa in reply to Viklou]

Yes, I’ll have to badger them to find out what it was. Knowing me, they’ve probably lost the result as per usual.

[FRreedman]

It is unusual for a colonoscopy to miss Crohn's disease. Note that I say unusual and not impossible, also you need to find out your Calprotectin reading, as this would indicate whether or not inflammation was apparent. As the definition of IBS is accepted to be "in the absence of any other possible diagnosis" , I cannot understand a negative diagnosis, unless your consultant thinks it is something else, and if so should treat you for that. If this were a school report, I would say, most unsatisfactory.

[kiisa in reply to FRreedman]

Yes, exactly. This is what I can’t understand... they have tested me for coeliac and all of the other stuff, I don’t understand how it can be nothing at all.

[Princesspeach84]

Is your flare ups monthly? I suffer with diarrhoea and stomach pains and I’ve got endometriosis and my flares were worse around my period. I’ve just recently had a laparoscopy to remove the endo and my symptoms have improved. If endo is on bowel it causes IBS type issues. Hope you find some answers soon x

[kiisa in reply to Princesspeach84]

My flare ups are very random, sometimes weekly, sometimes biweekly if I’m lucky. I have noticed the diarrhoea gets worse around my period, but assumed this was due to hormones increasing contraction in that area... I have thought about endometriosis before. But the only thing to lead me to endometriosis is that I have pain during sex. Other than that I have regular periods, and usual painful cramps. Do you/did you have endo in the bowel? How do they diagnose endo?

[Princesspeach84 in reply to kiisa]

Yes endo is usually around period but as it worsens becomes more daily. I have rectovaginal endo and this made me feel like I was swollen down there. I have never had heavy periods which is usual for endometriosis so not all symptoms apply. I once had diarrhoea for about 3 months straight! My endo was found as I got a lump coming out of my episiotomy scar, this is very rare. In a lap the surgeon can see your bowels, rectum and see what’s what and endo is usually missed with colonoscopy etc. Usually an MRI needs to be done but you need to see an endo specialist for op as gynaes can miss stuff. I had a bowel surgeon present for my op as well as endo specialist x

[kiisa in reply to Princesspeach84]

That’s very interesting, bless you. I hope yours has settled down a bit now. I think it’s worth mentioning it to my consultant, but I think I’ll just be fobbed off again. I guess I’ll have to end up going back to the GP and waiting about 4 months to even be considered for a referral... the worst part about it is that one GP I actually saw about my stomach/bowel problems, I did mention the pain during sex, she didn’t even address it. She just was like “oh..okay”... The whole thing is extremely frustrating... makes me wanna give up!

[Princesspeach84 in reply to kiisa]

It’s frustrating as a lot of medical staff don’t have a clue about endo. I’ve been told by my GP that my endo is cured (there is no cure) everywhere I turned nobody could advise me on medications, pain management until I paid to see endo specialist private (£150) and she put me back into NHS and basically ‘they got stuff done’ was given correct hormones and had op 6 months later 👍 I’m now always on their books so it was best £150 I ever spent!! It’s hard what to do in your situation but I would read into endo and if you think it could be I would be asking for a lap. I’ve had a transvaginal scan which showed nothing but lap showed I had it and had it removed. Endo is tough but once you know what’s what it’s easier to treat. Good luck finding out x

[kiisa in reply to Princesspeach84]

£150 well spent I’d say. At this point I’d literally do anything, as it affects me so much daily, it impairs my social and working life. I have to carefully plan what I do everyday. I was actually supposed to go for a transvaginal scan a few years ago, as they suspected PCOS, as my sister and other family members have it... never ended up getting the appointment letter!!! But, I will definitely try, have a read and bring it up to my doctor, thank you so much and good luck to you too xx

[Princesspeach84 in reply to kiisa]

No worries, message me any time, good luck 😊 x

[DRDarnell]

To me your lactose intolerant. You probably have been keeping a diary. Have you found any similarities with what you have eaten. Try eating a plant based diet for a few weeks. What have you got to lose.

[kiisa in reply to DRDarnell]

Sorry, but I’m definitely not lactose intolerant... I have tried cutting out dairy before with no effects, I still had the same symptoms.

[Carlettejaque]

It sounds like a food intolerance. This can lead to All of your symptoms. Some of the cramping could be from trapped wind. Cut out all dairy and check every single ingredient list on foods for it. If after a couple of weeks there is no improvement, try wheat, then yeast and even eggs. I presume you are already sticking to a low finals diet. If so try cutting out all fruits for a month. Hope this helps.

[kiisa in reply to Carlettejaque]

It’s not dairy or wheat. Already tried cutting those out with absolutely no difference in symptoms. I also barely eat eggs or food containing eggs. I have days when I can eat all of the above, and have no symptoms. What I specifically eat doesn’t seem to make a difference.

[Carlettejaque in reply to kiisa]

It could be anxiety. Also it might be worth getting private intolerance tests done, like York laboratories on line. I had it done and it came up with yeast, duck, buckwheat and dairy.

[BabsyWabsy]

Hi,

Migraine and Coeliac disease often go together, and coeliac can cause a lack of B12. You don't mention if you have been tested for this. If not, might be worth asking.

Has anyone mentioned Bile Acid Malabsorption? This is actually quite common but rarely diagnosed. There is a sehcat test that measure he amount of bile acid in you bowel. Too much means it is not being reabsorbed and will cause osmotic diarrhoea usually after you have eaten. This is treated with a sequestrant such as Questran. This might also be worth mentioning to your medical team.

I do hope you get some answers soon.

[kiisa in reply to BabsyWabsy]

Hello, I was tested for coeliac disease and it came back negative. I have heard of BAM before, is it common to have stomach pain all of the time even when you have days without diarrhoea?

Thank you!

[BabsyWabsy]

If you had the blood test it can give a false negative. My brother has BAM and Crohns, he does often have some discomfort, but I don't know if it is constant.

[kiisa in reply to BabsyWabsy]

Yes, it was a blood test. I’m aware it can give false negatives, but my doctor is lousy tbh. It’s not really constant - it’s just that I have it most days, some days hurts more than others. Same with the diarrhoea, comes and goes. But on the days with diarrhoea, usually the pain in that specific area is more noticeable

[BabsyWabsy in reply to kiisa]

Isn't it a literal and metaphoric pain in the bum!? The first GP I saw didn't take me seriously and spoke to me like a six year old, I was 65 at the time, but the next one a couple of years later did, and admitted he knew nothing about gut issues and referred me to a gastro. Turns out I have micro colitis, an 'old lady's' problem which can only be diagnosed by taking biopsies and looking at them with a microscope. It seems this is not usually considered in younger people, but common in my age group.

[london81]

i was in this situation for years- from my pregnancy at 19 til i was 35. i went multiple times a day, needed to carry wipes and a can’t wait card in case of emergency, change of underwear even although thankfully only had 2 accidents.

things that helped me( i would now say it’s reduced by 70-80 percent only flaring up a day or two at time of the month):

i did a version of fodmap and realised i was intolerant to loads of things- garlic, onion, chillies, wheat, dairy, etc. i cut them out and reintroduced ones i could tolerate in small amounts after gut healing (see below)

i looked up studies on probiotics for my particular symptoms- in my case bloating ,gas and diahorrea - i started taking probio7 which really helped

then i started taking glutamine to heal my stomach and drinking aloe vera with digestive enzymes

i started working on my stress levels and meditating ( i’m bad at it i just put on a meditation at night and fall asleep)

i left my stressful job for a less stressful job and part time i started working with animals - less pay more joy!

i also addressed my offer deficiencies such as magnesium, vitamin D, b12 and other b’s by taking a super b complex, iron etc

i use the thriva finger prick test to check my levels around once a year - i get a code so i usually pay half price around £42 instead of £84. it’s worth it as i have autoimmune disease and need to keep on top of this stuff

[Denisemurphy]

Hi, I realise You posted this a while ago now, but I wondered if the consultant ever mentioned Bile Acid Malabsorption? Or if you’ve been tested for it? It took years for me to finally be diagnosed (ended up seeing a private consultant who did the test) but my symptoms sound very similar to yours.

Hope you get some answers soon.