I need advice - possible Chrons?

Digestive health
1

Hi all, 

I am brand new here and awaiting my referral to the GI which is coming up in March. I would like to give you a run down of some of my experiences and symptoms I would really appreciate hearing from people with similar experiences and hearing any advice you may have:

- 6 years of IBS symptoms (both diarrhoea and constipation but mainly D during flares). This has changed and I feel much worse over the last few months. 

- Since Nov incredible pain which is always there but sometimes more intense right where my appendix is (they originally admitted me to emergency with suspected appendicitis)

- Years of pain in right side in line with navel which comes and goes

- Frequent urgency with D

- Sometimes constipation (especially when taking NSAIDS)

- Hard poo is usually very thin/flat - pencil/ribbon shaped

- Since last year fluctuating temperature up to 38 degrees

- Occassional heart palpatations

- Dehydration

- Blood and protein in urine

- Slightly elevated WBC and CRP (infection and inflamation)

- 7 sets of antibiotics since Nov which have done nothing

- Occassional blood in poo - bright red on wiping

- Blisters on inside of lips

- Fatigue and depression

- Blood filled blister appeared on butt cheek last week (not infected)

- NOTHING on CT scan

- Also, not sure if this is related, but last year my periods changed so I was not having a proper one but lots of spotting. Coil seems to have settled this down. I am mid 30's so it should't be menopause...

I have now been referred to gastro and urology because nobody seems to be able to help me and I feel like I am not being taken seriously by GPs. Has anyone had similar symptoms? Is it possible that Chrons does not show on a CT scan?

Sorry for the babble, but I feel like I am losing my marbles now...

Thank you!

Becky

2

I dont know re the  scan but do know mostly Crohn's is diagnosed only after a colonoscopy. Your symptoms do sound like Crohns but could also be ulcerative colitis.  You simply do need to press for a Colonoscopy ASAP

3

Thanks - I am pretty sure that's where I will end up but it's been a real struggle getting the appointment so I want to make sure I understand everything. 

4

Hi Becky

You're being referred on now to the specialists who will look at your symptoms and organise all the relevant tests which your GP is unable to do. It is really frustrating when you're poorly and it seems like no one can tell you what's wrong, but sadly, sometimes, diagnosis can take a very long time.  But at least now you're on the right track. 

There are many things it could be and various tests, but fingers crossed, you'll get a diagnosis soon and treatment. 

Good luck and keep us posted as to how it all goes. 

Hannah

5

Crohn’s is a pain in the arse (no pun intended). To be certain I would advise that you have a capsule endoscopy (camera) asap as it sounds about right. Do you suffer with fatigue?

6

Hi Darrol, 

Yes, absolutely I have fatigue. I also forgot to mention that I have arthritis which I think can be linked. I am playing amateur sleuth right now because my GP has no idea... Don't get me wrong, I am not hoping for Chrons because I know it is very debilitating, but I am hoping for an explanation for all the cra pgoing on (pun intended ) and this seems like the most obvious answer to me from my Googling. Thanks for your reply

B

7

Thanks, Hannah. I will be sure to let you all know about the outcomes. Fingers crossed I can get all of this explained.

B

8

Hi Bex I'm sorry to hear that you're suffering from all those standing appear to be getting nowhere in establishing the cause. As others have said the process of diagnosis can sometimes be protracted but in the case of Crohn's or UC it is not often definitively diagnosed until a colonoscopy is carried out and biopsies are studied. Your symptoms certainly add weight to the possibility of Crohn's or UC but also could be other contributory causes. The range of symptoms can sometimes be overwhelming and when GP's put it down to (the convenient) IBS we are not helped. I think the NSAIDs should be discontinued as they are most definitely contraindicated with IBD related issues and some authorities think that they may indeed be a contributory factor. I have had diverticulitis for some years along with Crohn's and flare ups can be down to either or both. The nagging pain at right side has always been a symptom of my DD flare ups without any other visible changes to BMs etc. Bright red blood could also be haemorrhoidal particularly if you are prone to periods of constipation. I wish you well lovey and hope you get a colonoscopy soon and make some progress in getting a diagnosis.

9

Thank you! I do feel like it has been fobbed off as IBS recently even though I have been in so much pain and with fevers/palpitations etc. Luckily, I have got the appointment soon with the specialist and so I am compiling a good list of my symptoms to hand over when I arrive as I will kick myself if I forget something. 

It sounds like you have really gone through it all - I hope that you are managing your symptoms. Sometimes I think the doctor thinks it's all in my head which doesn't help at all. 

*Trying to be positive*

Thank you for the kind words of support. I will keep you informed when I get the tests back.

B 

10

Bex, please do not let them fob you off demand that you want an endoscopy and a gastroscopy, without these two i would not of found out what i have wrong. i am now 6 months on Asacol and have never felt better. I was always so tired and had every symptom you had. I have been diagnosed with colitis/crohns as i have symptoms of both! The doctors fobbed me off for years and this made it much worse.

Get well soon thinking of you xx

 

11

Hi, I agree with other forum members. You find out after the test. 

12

Hi Bex,

​Crohn's wouldn't necessarily show on a CT. A CT would show a thickening of the intestinal wall if there's a large amount of inflammation or scarring from previous inflammation/ulceration. CT's a more general 360 ultrasound to show any problems with your internal organs in that area e.g. gallstones, appendix probs etc.

​Your GP should have complete a faecal calprotectin test (requires a stool sample, or ideally multiple stool samples) it's step one in understanding if there's more to explore in terms of IBD (Crohn's / ulcerative colitis) - although it's not a conclusive Crohn's test - it will show if you have high inflammation levels which heavily suggests Crohns/Colitis. It wouldn't hurt to request one in the meantime as it will better inform the GI and probs will be the first thing they'll ask for - so save time and get one through your GP if you're still on talking terms!!

​Best of luck.

Matt

13

Thanks, Matt. I will do that. I might even get to see the specialist before my GP at this rate ( I am sure she thinks I am being dramatic but palms me off with a ton of codeine and amitriptyline to use with the usual pain relief). My appointment is a week tomorrow and so I am really appreciating this information to help me understand the tests I need to find out what is going on. 

Many thanks, 

B

 

14

Thanks, lovely. I feel better just knowing I am not alone and that other people eventually got it figured out. I am going in with determination to get those tests. Glad to hear you found a drug which works for you. 

Best, 

B

15

Update: I saw the GI who was just lovely and has booked me in for endoscopy, colonoscopy and MRI scan. He thinks it could be Crohn's but is also worried about peptic ulceration (pretty sure I have this as I am already on Omeprazole) and possible gallstones in bile ducts (after cholecystectomy). 

He has said that IF nothing comes back post these 3 tests, he will refer  my to gynecology to have a laparoscopy to check everything there as I am also demonstrating symptoms of endometriosis. I know it sounds odd, but I need them to find something to explain this pain and fatigue soon and I don't much mind what it is so long as I can start to deal with it pragmatically. 

Has anyone had the pillcam on NHS UK? Does this provide better results than the tests I have been offered?

Also, do you think my stomach ulcers could be linked to Crohn's, or is this just a separate symptom?

Thank you all for the support and maintaining my sanity somewhat, 

Bex 

16

I was diagnosed with Crohns when I was 12 (over 30 years ago!) they used blood test, upper & lower gi (barium drink & enema, the worst!) & colonoscopy. My symptoms were severe cramps almost like food poisoning they would come & go like contractions 2, vomiting, high fever 103-104, high white count, severe anemia. I didnt have a problem with diarrhea until about 15 years ago. Never had a problem with constipation or bloody stool. I also had severe pain in the lower right side but not appendicitis. Back in the day if u had a flare it was prednisone (makes u bitchy, chubby faced, & FAT) & bowel rest, no food 1 week! Even when I was pregnant! This is drs at Mass General a very good Boston hospital. Now there are biologics like Humira (thank goodness, I havent had any side effects from it!). Ive heard stress on the body plays a big role on flares. I started symptoms at 12 (puberty big body stress!) My first surgery was in 92 10days after my son was born (another big body stress) , i had a ginormous abcess in lower right side. PLEASE let me give you some IMPORTANT ADVICE. DO NOT let the take any intestine out surgically unless it is ABSOLUTELY NECESSARY!!! I CANNOT STRESS this enough! Once they start cutting it NEVER ENDS! I have had 10 resections (also 4 surgeries for anal fistulas, another side effect of Crohns) and now Im in remission BUT suffering from all the side effects as a result of Crohns and surgery. I have 2ft of small intestine left, I have short bowel syndrome, chronic fecal incontinance (the worst!), osteoporosis with compression fractures in my back, I had a colistomy for a year which they said would solve everything (imagine taping a zip lock baggie full of diarrhea to ur stomach, its awful) i had it reversed after a year, I also have had chonic pain in that lower right side of abdomen where my pain started from all those surgeries, I have been on serious pain medications for over 15 years, its NO WAY TO LIVE! Also, if it is Crohns ask about oxylates. These are found in foods and some Corhns patients cant absorb them. They go 2 the kidneys and form stones. I am in renal failure now & on dialysis 3 days a week. Nobody mentioned oxylates to me in all the time ive had Crohns. You CAN control oxylates with diet. I just wish I had known before it was too late. Just please advocate for youself! Make sure you get a second opinion if they EVER wanna cut. I really hope they can find an answer for you but I hope its not Crohnes or UC. SORRY this is so looong! Good luck and keep us posted!

17

Hi Bex, that's great news. A good consultant is half the battle, and I can relate to just wanting to know what it is. Once you can put a name to it you can set your own expectations, start to come to terms with it and hopefully get everything into remission/management.

I've had one pill cam and due another late this week. The 3 investigative procedures recommended are the core ones for finding gastro issues. A CT scan can also be used for 360 ultrasound e.g. gallbladder issues at. He may refer you for straight ultrasound or CT once these are done.

An endoscopy and colonoscopy only go so far - leaving an area of intestines not imaged. If it's Crohns and really bad the MRI should show but if it's smaller ulceration in the blind spot a pill cam fills in the blanks.

Matt

18

I need help. I last updated saying that I was getting endoscopy and colonoscopy in a couple of weeks. Well that was fine until a few days ago where I can hardly eat and then started to vomit bile then blood. I know that's not normal but wanted to find out if anyone has had similar?

Currently on a long drive but I think I should head to a&e as soon as I am back. Any thoughts? Feeling scared right now.

Best,

Bex

19

Definitely seek medical help as soon as possible.