Diagnosis

[Rosiesdaddy21]

Hi folks. Would like to hear how some of yous got diagnosed, what symptoms yous had etc. I’m still left in limbo waiting on tests etc. It’s horrible!

[FRreedman]

GP sent referral to GI consultant, after all the blurb, it said reason for sending referral: patient's mother is driving me mad. That was 49 years ago.

[Rosiesdaddy21 in reply to FRreedman]

For real?

[FRreedman in reply to Rosiesdaddy21]

100%. After Crohn's was diagnosed. this particular GP couldn't do enough for my mum. If we needed a form signed to move flats, (so I didn't have to go up so many stairs), he put a line through the form and wrote an article on the form and back. We don't know what he said, but we were offered a lower flat within 6 weeks.

[hhl18]

My son was diagnosed after being referred to a paediatric GI consultant for which we had a 6 month wait! He was suffering with fatigue primarily following a period of illness for which IBD was a possible cause). The consultant did a calprotectin test which came back very high (over1800) that flagged up likely IBD then a colonoscopy followed.

I now hear of Doctor’s carrying out calprotectin tests & would urge anyone with possible IBD symptoms to request this from their GP. Perhaps if we had done, he could have been referred a bit more urgently & got the diagnosis & treatment a bit quicker.

Fortunately in the meantime I was able to help him by identifying what foods to avoid & doing some gut healing work but it would have been helpful to know what we were dealing with earlier. Hope you don’t have too long to wait.

[Rosiesdaddy21 in reply to hhl18]

I’ve done a stool test, my readings are just over 500, done some blood tests, my white cells are border line low. Getting a colonoscopy on 23rd, just want answers as I’ve been feeling terrible the last couple months. What do you mean by the period of illness? What has your son been diagnosed with? Sorry for all the questions. My heads in overdrive

[hhl18 in reply to Rosiesdaddy21]

For him it all started with what seemed like a flu sort of virus. It was unlike him to be knocked out for a week & he didn’t really recover fully, spending lots of time lying on the sofa instead of running round outside! He went back to school but soon after developed strange lumps on his shins which was diagnosed as Erythema Nodosum. He had been suffering with constipation for a while, without me realising how bad it was & had fissures with some bleeding. He also had a mouth full of ulcers. We managed to sort all that out & the only remaining issue was fatigue, which the dr said was post-viral fatigue. He could only manage 2 hours at school a day & even then was exhausted at the end of the week & would sleep all weekend. His blood tests showed low iron but his haemoglobin wasn’t too bad so the GP wasn’t concerned. However when we eventually saw the consultant we found out that the signs of IBD were all there. He was diagnosed with Crohn’s from his colonoscopy.

We were told straightaway after the procedure what they had seen & that it was Crohn’s & treatment was started there & then pretty much. It was all confirmed about a week later with the biopsy they took at the same time.

I know it’s a lot to take in & it is understandable to be worried but if you have a colonoscopy booked then most of the waiting should be over. Once you know what it is you will be able to get the help you need & work out how to manage it. Good luck!

[Rosiesdaddy21 in reply to hhl18]

Such a shame for a young lad, or anyone having to go through that. At a precious stage in his life too. Really means a lot for you taking the time to get back to me I appreciate it. I hope your son is feeling better and treatment is helping him.

I’ll get back to you after colonoscopy and let you know how I get on.

Ps, the shin part has helped as I’ve strangely been getting pain in my shins, driving me mad!! Thanks again

[hhl18 in reply to Rosiesdaddy21]

You’re welcome & glad it helped. He is doing much better now thanks. He chose to follow the liquid elemental diet rather than go on steroids & still has quite a limited diet but he’s been a star in how he’s coped with it - it is worth him not eating the same as his friends when he feels better for it! He still has occasional off days when he just needs to rest but otherwise is fully back to school & doing Pe & running round with his friends. You will get there - let us know how you get on

[Rosiesdaddy21 in reply to hhl18]

I’m glad to hear he’s doing much better now tho. Sorry for being forward asking all the questions. Go off on tangent sometimes 🙈 thanks again. Speak soon

[Crohniehound in reply to hhl18]

This sounds very much like what happened to me/how I felt when my Crohn's started at a similar age to your son, but in my case colonoscopy didn't show anything. Also, the doctors really didn't know as much back then.

[Crohniehound]

I was diagnosed (Crohn's) from a biopsy taken from inside my mouth, as that's where the most obvious inflammation was, after over a year of inconclusive investigations (colonoscopy, endoscopy, barium meal, barium enema, and loads of blood tests and other X-rays etc). That was in 1984 when I was 16.

I'd been underweight and anaemic for some time (aged 13-14) had constipation and no appetite. Then I had a bout of severe gastric flu, when I couldn't keep anything down for almost two weeks. I can't remember now how much later it was that I woke up one morning before school, looked in the mirror, and saw my lower lip was so swollen on one side it looked like I'd been punched in the face. I'd already been getting mouth ulcers. That's what kicked it all off.

My GP didn't have a clue and sent me to a mouth 'specialist' who treated me like some kind of museum exhibit (constantly wanting to take photographs for medical illustration purposes, or so he said) but not really having any idea how to help me... until he eventually referred me to the gastroenterology department. Then it still took a long time for them to work out it could be Crohn's - I don't think any of them had ever seen anything quite like it before.

I'm pretty sure that's when they started me on steroids (prednisolone) and things improved in my mouth, but it was some time later when I had my first internal flare-up, which felt like appendicitis (but wasn't). I remember it well, because it was Christmas Day! I was admitted to hospital a few days later for observation. Then began the saga of periods of being okay-ish and having flare-ups when I'd need to go into hospital for a few days and they'd increase the dose of steroids.

Eventually it got to the point where they said I'd need an operation (right hemi-colectomy) but in the event, the Crohn's wouldn't wait - I was rushed in for emergency surgery, which they flunked (basically they opened me up but then didn't do anything - we still think incompetence on the part of the surgeon, though we couldn't prove anything at the time). I was sent home in an even worse state with a bad wound infection, hardly able to eat, in so much pain I was almost bedridden, and on 60 mg of steroids a day, which weren't helping at all by this point.

My parents demanded that I was referred to St. Mark's in London, the specialist hospital. They took one look at me and admitted me. An ultrasound showed I'd got a perforated bowel abscess, from which they drained a litre of fluid. Then they performed the surgery that the other hospital should have done, and cleaned up my wound. After this I felt so much better and could eat normally again for the first time in years. But as a result of the abscess/infection, I got osteo-myelitis in my right hip so I could hardly walk or stand up straight and had to spend another two weeks in hospital on IV anti-biotics.

It was only after all of this that I learned to 'see the signs' and manage my Crohn's better, but I've still needed to undergo four more resections for strictures and fistulas since then (last one 12 years ago). Azathioprine worked for me for 9 years before my current hospital took me off it due to increased risk of side effects (melanoma and lymphoma). They changed me onto Methotrexate almost two years ago, but last year an MRI scan showed the Crohn's was more active again, and by the end of the year I was experiencing more symptoms. I started on Humira injections at the end of December and things are a bit more settled again at the moment. I'm really hoping this will continue.

[SORRELHIPPO]

I was diagnosed with Crohn's after 3 weeks visiting loo 8-10 ties a day and 10-12 at night, ruled out infection with stool test, when my husband came home and found me so dehydrated and confused, that I was propped up against the kitchen sink, with a spud in one hand and the peeler in the other, crying because I did not know what to do with them, "blue light" to hospital. Did numeroous bloods but diagnosis was made when I had a colonoscopy and nips of tissue were also taken. I also learnt that if the diarrhoea starts you need to start drinking well and taking a rehydration solution such as Dioralyte, to keep fluid and body salts stable. Since then I have had more colonoscopies and another useful test which showed up narrowing well, which was a donut CT scan with contrast dye. Good Luck