Experiences please, could this be Crohns?

Digestive health
1

Hi

Just some advice regarding symtoms as I seem to be going round in circles with my GP and trying to work out what is going on with me myself.

I've had IBS for 10 years, can't remember what tests I had when that was diagnosed, but don't think it was anything much. My bowels have always been an issue, cumulating in the formation of an anal fissure, and an anal polyp which was removed when I had botox into the fissure (which did bugger all by the way!). The polyp didn't show anything, any I was discharged from that consultant, and have decided to go back to living with the pain of the fissure as i don't really want to go back!!

For the past 6 months I've had:

Near constant nausea, worse in the mornings, about 1 hour after eating and on an empty stomach

Vomitting regularly, about once or twice a week, no foods in particular seem to trigger this

Upper abdo bloating

General upper abdo pain

Increased frequency and looseness of bowels

Increased belching

Increased acid reflux (now on 40mg omeprazole a day to no avail)

Not had any weight loss, which in a way is a shame as I am overweight. No real weight gain recently either though.

I've always got some degree of lower abdo pains and cramping, which was always put down to the IBS, sometimes it is fairly severe, but never to the point of debilitating which I know quite often crohns is, hence why I think I might be over worrying about it being that.

Does this sound at all typical of crohns? And if possibly what tests are there for this? I've been denyed a gastroscopy as apparently I'm too young (31), so not hopeful I'd get a colonoscopy either (not that that is exactly at the top of my wishlist...). I just wonder whether to bring this up with my GP.

Incidently I have recently had some bloods which has shown my lymphocytes are slightly raised, but they have been for 3 years, my CRP was slightly raised (I didnt feel like I had a cold at the time), and I was anaemic about 6 months ago unexpectedly, but 2 months following a course of iron it is still at a good level, though my MCVs and MCHs are a bit low still, and my feritin store is on the low side.

​Thanks for any advice ior thoughts at all, even if it is just to tell me my symptoms are no where near severe enough to be crohns!

2

Hi buckyThat's sounds dreadful.

It could indeed be Crohns or Ulcerative Colitis or a number of other things.

Your GP should refer you for an urgent colonoscopy and I would press him/her for this as it is the only way you'll find out definitively. A lot of doctors  find IBS is a good diagnosis as it is so variable and inconsistent.

Your doc should've referred you already if you have vomiting and nausea all the time.

Good luck

Pete

3

Sorry about the name my autocorrect is playing gamed

4

Thanks for your reply, it's nice to know I'm not just completely over reacting about this all! I'll have to hassle him a bit more. In fairness to him he wanted to get the gastroscopy first as my new symptoms are mostly upper gastro, and I think of that didn't show anything was going to consider a colonoscopy, but it's all gone round in circles with a consultant who hasn't even seen me rejecting the referral as apparently I'm too young to need a gastroscopy, however failed to actually notify me or my gp of this so we only found out after 6 weeks of waiting when I asked the gp to chase it.

If they keep rejecting it ill ask him to try another hospital, I just hate pushing it if I'm actually just making a mountain out of a molehill!

Thanks again for your advice.

5

I can't believe the gastro wouldn't see you! I would ask for a referral to a different one if that's possible.

​Your symptoms sound very much like my daughter's who was diagnosed with Crohn's just a week ago. Her bloods only showed very slightly raised white blood cell count and neutrophil count (for over a year) and recently slightly raised CRP. Are your platelets high - or towards the high end of normal? (gastro pointed this out as sign of inflammation too) - my daughters were 320 then 380.

​The one thing that got us an urgent referral to the gastro was the results of a faecal calprotectin test - it can detect levels of inflammation in the digestive tract. If you have IBS you shouldn't show signs of inflammation.

​My daughter's symptoms were not very severe (just extreme exhaustion/ME), low ferretin, anaemia, acid reflux, occassional stomach pain, anal fissure which healed on its own - so it put us off pushing to see a gastro

6

Hi vicky

I'm 30 and I've had crohns since 17, I don't know why they're not giving you help because I've had (unfortunately lol) 3 colonoscopies and an endoscopy and basically every test they could give me and I'm being considered for surgery. Go back to GP and get referred to the hospital again and really push for them to help you. Having crohns is awful and really does affect your life. Get help for what your dealing with. It took me 2 years of constant badgering to finally get help and honestly it's worth it, they kept quoting IBS.

Also if you haven't already really change your diet cos everyone with crohn's have a large amount of trigger foods.

Hope you get better hon

7

Hi Vicky, it could be crohns or something else. I suggest a second opinion from other consultant. You can't let it go on.

8

Hi, I am going to be brutal here, but whatever anyone else says on here, you need professional help and advice as you have not been diagnosed and not had the necessary test i.e. colonoscopy etc.  You must be firm with your doctor and insist in these tests because something is causing your symptons!!!!  If he doesn't do anything then I would say change Doctors but that is not easy with the state of surgeries etc., you must contact the necessary ruling bodies and complain.  You are not making a fuss, your health comes first so be more assertive !!!!.  Everyones symptons and findings are completely different. You must know what you are dealing with and then ask for help on here.  Sorry to be so brutal but you need answers from professionals first.  This site is very good once you know what you are dealing with.  I wish you very good luck and hope you get things sorted very soon.

9

Thanks for your reply, it's reassuring to know I'm not just making a fuss out of nothing. I cant remember what my platlet count was, I know it was in normal range but not sure exactly, will check with my GP. Your daugthers symtoms do sound so simular to mine right down to the exhaustions!  Unfortunately my fissure has chosen not to heal on its own, but I've probably had it on and off for about 10 years! Its good to know others experiences and that I am not being unreasonble to ask for further help. Thank you.

10

I feel like the gastroscopist thinks I want the gastroscopy for a good time! I'm reluctant to change my diet too much in the worry if I find a trigger it might then stop something being diagnosed, but going to start a strict food diary to see if I can figure out just what is triggering it. Is there anything that is more common in Crohns? 

What symptoms did you start off with to get you diagnosed if you don't mind me asking? and are scopes the only way to diagnose it (I dread anything like that. I gag when trying to swallow medicine, so not entirely sure how I'm going to get a tube down, and not even going to start on the thought of a colonoscopy!!!)

11

Hi, thanks for your reply. Believe me, I fully agree. I'm not asking on here for advice on how to manage the symptoms and get a diagnosis, really just looking for experiences of these conditions and whether I'm just being a bit of a hypercondriac keep hassling my doctor and thinking this is what it could be. I am quintessentially british and don't like to make a fuss over anything (or nothing!) , probably just looking for a bit of justification for continuing to hassle the GP!! He's actually being very good about it, he was willing to refer me for the gastroscopy, it's the hospital that don't want to do it, I was looking for other peoples experiences on whether that was right.

I think my biggest fear is pushing for all these tests and them all coming back negative and me feeling like I've wasted everyones time, and I have to live with feeling this rubbish for the rest of my days with the likelyhood it's all just in my head....

12

Forget your fear for pushing for the tests.  Ideally they will come back negative and if they do you have still NOT wasted everyone's time.  You have peace of mind and that will help the symptons.  The more you worry sometimes the more symptons !!!!!!!!  I have ulcerative colitis and stress and worry play a part in my illness.  If the Hospital are refusing then complain.  You are fully entitled to tests.  Good luck.

13

Colonscopy is nothing to worry about.  Its not very nice, its not painful but the worst for me was facing my consultant in his office afterwards on a normal appointment knowing he had seen me in a less ladylike way. When I had it done, the nurse sat at my head end talking to me and holding my hand whilst he did the bottom work (excuse the pun).  With regard to food, I cannot eat grapes and I have to be very careful with the  amount of fruit I eat and I have to be careful with nuts. Just my experience.

14

Don't worry about any procedures, they give you plenty of sedatives it's the thought more than anything. But they've always been lovely who's done it.

My the first 5 years was constant diarrhea, as in I was constantly running to the loo even mid meal. Now it's just pain, so much pain. I can constantly feel my stomach if that makes sense and the trapped wind is such a nightmare especially when it goes in my back. I had a colonscopy about 2 months ago and they give you the photos that they take and I was red raw, you could see how bad. Gross but fascinating lol.

My diet is a no-no for fruit dairy cereal curry Chinese caffeine (the only tea I can drink is Tetney tea) pop sweets alcohol wholemeal. Well basically anything with acidics or fibre in. I like to still have a treat now and then but I do it on a weekend so I've got time to recover. But my mums just been diagnosed and she's fine on dairy but mushrooms are a killer for her. It's each to their own