Crying writing this!

[Emma19]

Hi everyone! I’ve just joined this group and I’m in tears writing this!

For years I have been in pain, abdominal pain. I’ve been under gynae for all this time and they could never find anything majorly wrong apart from cysts and a burst cyst years ago.

My mum has crohns and I kind of disregarded it as I don’t have loose stools like runny or blood that often. I have had fresh blood through my poo but not very often so I didn’t think it could be crohns. I had a colonoscopy about 10 years ago and it was fine, another reason why I thought it can’t be that.

Anyway, I’ve since been doing some research and literally every other symptoms matches up! Even read it can cause pain during sex which I get, if can be worse during your period which is always the case!!! Hence why everyone thought it as gyne related.

As much as I don’t want to have anything wrong with me, to have answers to this ongoing struggle would be such a relief! I feel like everyone doesn’t believe in my pain anymore!!!

Anyway, does anyone have any advice on what to do now that I think it could be crohns?

Many thanks and sorry for the long post!!

X

[bantam12]

You need a referral to a Gastroenterologist and some new investigations, if it is crohns you need to get on some treatment.

[Fatima_sh]

You need to see a gastroenterologist and get a colonoscopy done again, because your body most likely changed in these 10 years. It took me 8 years to discover that I have Crohn’s !

[EOLHPC]

Hello emma: i agree with fatima & bantam....and i’m feeling for you greatly!

Your post rings a bell for me, and here is why:

My husband of over 30 years + his sister have early onset crohns and i’ve cared for them through decades of bowel surgeries. So crohns has been my life for a long long time. But the NHS & i have been concentrating on my primary illnesses (infant onset systemic lupus + Hypermobile Ehlers Danlos + early onset hypogammaglobulinaemia...with various secondaries including endometriosis)

It never occured to me that eventually the NHS would be investigating me for “crohns-like” signs & symptoms, but this started almost 4 years ago with sudden severe onset persistent pain flares triggered by my intestines suddenly hyper-reacting to “normal” pressure at my vag apex during sex (our sex life had always been fine, ie had NEVER included this sort of pain before). Well, after urology & gynaecology had spent plenty of time investigating this, ii was finally referred to gastroenterology 17 months ago...and since then i’ve had every investigation from yet another colonoscopy + gastroscopy (i’d had plenty of these over the decades) through to barium swallow, then video capsule endoscopy and next up is CT Enterogram. Meanwhile i’m in my 14th week on crohns care protocol EEN (exclusive enteral feeding with cartons of “nutricia elemental 028 extra”, and no food by mouth other than plain rice cakes - this is helping me lots) and my combined therapy lupus meds & hypogammaglobulinaemia meds are also helping quite a lot to reduce my peristently flaring intestinal signs & symptoms (especially rheumatology’s 10mg prednisolone & 1000mg mycophenolate & immunology’s constant daily oral antibiotics)

Some background:

I am 64 and my lifetime has seen the chronic conditions that make up my own mouth to a**s GI tract chronic illness gradually being diagnosed with treatments + managements prescribed ongoing (slow transit dysmotility. oral inflammation, dysphagea, oesophagitis, gastritis dud to small intestines bacteria overflow, gastroparesis, duodenitis, slow transit dysmotility constipation with teen onset prolapsing stranglulated piles getting full on NHS haeorrhoidectomy in my late 20s).

It never occurred to me that my small intestines were the one part of my GI tract that had gone uninvestigated & undiagnosed until 3 years ago when sex suddenly began tirggering that terrible pain in my abdomen. Back then, the NHS had started multidiscipline investigations with a year under urology, where their aspect of this was investigated, diagnosed & put into treatment ongoing. Then gyn oncology investigated and is continuing to monitor my case. Then in dec 2016, gastroenterology began the investigations i’ve already mentioned above, alongside specialist gastroenterology dietetics & nutrition’s food challenges etc erc. Meanwhile my severe intestinal manifestations persisted and increased until last spring when i became unable to tolerate food by mouth and was prescribed the Crohns protocol EEN which has my intestines feeling MUCH MUCH better than they have since this sudden severe persistent intestinal flare started in autumn 2016. gastroenterology is liaising closely with both my lupus clinic rheumatologist & my immunologist, because it’s clear that early onset Crohns-like inflammatory process has been affecting my small intestines long-term and is now greatly affecting my quality of life.

Apologies for going on at such length....but i hope you can see why your post rings a bell for me. I now wish that i had asked the NHS to look into my small intestines signs & symptoms much earlier in life. but i didn’t because i thought these abdominal signs & symptoms were just normal & IBS-like....and of course the degree of abdominal signs & symptoms i was experiencing all my life seemed like NOTHING compared to the dreadful Crohns manifestations my husband & his sister were living with day to day for decades.

So, i am very glad you’re here, and i hope you will be referred to gastroenterology soon....please let us know how you get on

Good luck XOXO , Coco

[HJ10HMO]

Hi Emma, I feel for you. Like you all my life I have been referred to gynae. 7 years ago i got diagnosed with Crohns only because i went private, however if you go private you do not get the follow up and my GP failed to chase anything up on the diagnosis. I recently had a cancer scare and had lots of bloods taken which showed high platelet count and very low Ferratin, a locum GP said I should have a Gastroscopy to see if Crohns was active and it seems my terminal illeum is stenosed. Got referal to gastro and the doctor went mad at the way I have been treated. Have now had loads of tests, MRI in 3 weeks time and at last i feel like I am being believed and might get some treatment. I generally thought i had got lazy as tired all the time and constant tummy pains, having to get up at least 2 hours before work to ensure I had time to clear my bowels as always need to go 3 or 4 times first thing in the morning and my commute stuck in traffic jams was not an option with the cramps, i know i dont need to explain to those who have the disease. Still waiting all test results but relieved that at last something is being done.

Get that referal and take it from there.

Mo

[Emma19]

Hi everyone, thank you so much for commenting, it really means a lot. I’m sorry to read about the suffering this has caused you also.

I’m worried incase my gp thinks I’m just looking for a reason for all these symptoms, feel like a fraud and if scans etc come back clear again I will feel so humiliated!!! I did think about going private, at least for an MRI scan and see if they can pick it up on this. I know I probably need a colonoscopy though. Phoned my gp today but no appointment so I’ll try again tomorrow.

Any advice on how to go about telling him this is what I think is wrong with me?

Thanks again! X

[EOLHPC in reply to Emma19]

Hello emma: others here are more expert than me, and you may already have done what i’m about to suggest, but, if i were asking for the advice you’re seeking, i’d go to NHS Choices and consider their advice, because it should explain how both your GP & gastroenterology will be considering your case re Crohns investigations, so here is the link:

nhs.uk/conditions/crohns-di...

Take care XOXO

[Emma19 in reply to EOLHPC]

Thank u very much x

[Hobbits]

Hi Emma19,

Have your doctor give you a referral to a Gastro specialist.

Sometimes in the early stages of IBD your colonoscopy can be clear, mine was. I had several clear ones. Then because they could not find the source of my rectal bleeding they did another colonoscopy and because of a blockage they could not complete the colonoscopy, they did manage to take tissue samples.

That finding triggered an MRI which found a structure, skip lesions, and ulcers confirmed and gave them a better look at what was going on.

There is a Calprotectin fecal test to look for inflammation in your stool, however this test, you may have to pay for yourself if you don’t have a diagnosis or insurance. Not sure, but in Canada mine can only be ordered by my Gastro after diagnosis to be covered by my insurance. I know others pay for this.

Your Gastro will usually do

Fecal occult blood test

Stool culture

Ova and parasite test