Crohn's Disease Forum » Your Story » Undiagnosed misery!!

07-31-2012, 04:03 AM   #1
Join Date: Jul 2012
Location: london, United Kingdom
Undiagnosed misery!!

Hi Everyone

I am new to this site, so please bear with me if you will. I just do not know where to start first with my story/ordeal. I have been suffering for the last 11/12 years and still do not have a diagnosis.

My problem started years ago when I started to get really bad pains in the right side of my abdomen that went round into the lower part of my back, I went to see my GP who sent me for an ultrasound, the ultrasound showed that I had a large gallstone, an appt was made for me to have surgery to remove this, but a week before surgery I was taken by surprise by this really bad pain, unable to breathe properly and I collapsed outside my sons school. I was taken to hospital, put on an IV for just over a week, then had the surgery to remove the gallbladder.

Well it has all got worse since then, straight after my surgery the consultant came to see me and was a little concerned as to why my abdomen was so distended, he immediately ordered an emergency x-ray and put Nil by Mouth above my bed again, I was beside myself with worry, on the way down to the x-ray room the nurse informed me that they think there might be a perforation of the bowel.

Anyway it ended up there was not, but to try and cut this story a bit shorter, they still could not get my liver enzymes to go down as they had been raised ever since the op and on releasing me from hosp they gave me an appt to return to have a barium enema, apparently this showed nothing.

After 11/12 Years now I am still suffering immensely, I have alternating constipation/Diarrohea, got taken into hosp on 6th June with a blockage, the worse one I have had yet. I have had CT Scans, Barium follow through which showed ulceration and a slight narrowing of the ileum, MRI Scans another one is booked for the 3rd Sept, now I am struggling with unexplained weight loss and have been put on Fortisip Nutritional Drinks by my GP. A few years down the line when I was under a different hosp I received a phone call one evening from a doctor at the hosp informing me that they suspected Chrohns, but since I have been transferred to this new hosp the consultant there doesn't seem to think I have.

I am sitting in bed right now with a TENS Machine on, taking pain meds and still undiagnosed. Please help!! Sorry to have dragged on, I am just so pleased I stumbled upon your site.
07-31-2012, 06:02 AM   #2
Angrybird's Avatar
Join Date: Nov 2011
Location: Cambridge, United Kingdom

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Hello and welcome to the forum I am sorry that you are still struggling to get a diagnosis

I noticed reading through the tests the docs have done that no colonoscopy has been done - is this correct? I would say that this is one test that should be sorted so a proper look inside the bowel can be done and biospies taken - these can sometimes really help towards a definitive diagnosis.

When are you next due to see the doc to discuss things? I would definetly ask about this test. Also do check out our undiagnosed sub forum as well, there is a great bunch here to have a chat with as well:


DX: Crohns July 2002
Surgery: Ileocecal Resection Sept 2011
Now:Tummy behaving itself and new mummy to baby Nicholas
Current Meds: 6-MP 75mg,B12 injections every 3 months
Previous Meds: Budesonide, Prednisone, Remicade, Pentesa,Hydroxychlorequine,Azathioprine (tried twice) and Methotrexate
07-31-2012, 06:22 AM   #3
Join Date: Jul 2012
Location: london, United Kingdom
Hi There

Thanks for replying, yes I have had 2 colonoscopys done the first one they said was ok, the second one was carried out by the top gastro consultant himself and he was quite alarmed at the positioning of my colon, apparently the procedure was so difficult he could get no where near the small bowel which he was aiming for, as he wanted to check for the presence of chrohns, he said part of my bowel that should be positioned on the right side of my abdomen has been pulled right over to the left hand side making it impossible for access to the small bowel.

He has now said that another colonoscopy is too risky. My consultant contacted the surgeon to discuss surgery to have a look, but don't ask me why he is adamant he doesn't want to touch it, they won't even give me a laparoscopy, I am beside myself with worry especially now that the weight is falling off of me, because believe me when I say I have always been a very slim person anyway so I have no weight to lose, I am beginning to look anorexic.

If it wasn't for my GP writing to my consultant again with her concerns, I wouldn't even be having another MRI on the 3rd Sept. I think the only time I will get a proper diagnosis is when it's too late.

Thanks again for posting a reply and I do hope you are coping with your chrohns.
07-31-2012, 07:18 AM   #4
Angrybird's Avatar
Join Date: Nov 2011
Location: Cambridge, United Kingdom

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Has anyone ever mentioned a pill cam - this way can then look through the entire GI tract?

For me the tum is currently behaving itself and I am not having issues with my current meds (had to change them recently due to side effects).
07-31-2012, 08:08 AM   #5
Join Date: Jul 2012
Location: london, United Kingdom
Hi There

I had the pill cam about 4/5 years ago results came back negative. The thing that worries me also is whilst I am awaiting diagnosis my symptons are getting considerably w suchnasorse.

I have read so many threads whereby people have had different tests time and time again and they have come back negative only to find out years down the line that they have chrohns. Don't get me wrong its obviously not something I want to be diagnosed with, but I have almost all of the symptons such as:

alternating diarrohea/constipation
really bad stomach cramps
fatigue/tired all of the time
mucus in stools
aching joints
I have even noticed a change in my vision recently.
07-31-2012, 08:35 AM   #6
New Member
Join Date: Jul 2012
Location: Netherlands
Maybe Cholecystitis?, this is an inflammation of the gall bladder and will irritate the bowel as well. Removing the gall bladder doesn't (always) mean you get rid of this disease.

for more info you'd better google Cholecystitis after cholecystectomy, i'm not allowed to post url.
07-31-2012, 08:36 AM   #7
Angrybird's Avatar
Join Date: Nov 2011
Location: Cambridge, United Kingdom

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A lot could change in 5yrs so it might be worth requesting this test again depending on what they find on the MRI.
07-31-2012, 11:00 AM   #8
Join Date: Jul 2012
Location: london, United Kingdom
Yes with the pain I am experiencing this last couple of days, they have got to sort something out, I just feel so depressed and alone with all of this. Thanks for your support
07-31-2012, 11:28 AM   #9
Forum Monitor
Farmwife's Avatar
Join Date: Apr 2012
Location: Michigan

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Hi and welcome,
I decided to pop and say we're from the undiagnosed group.
My little farm girl is 3 1/2. She's been sick her whole life with one thing or another. Know the puzzle is starting to come together and pointing to crohn's for her.
I have for years been told one thing or another. Made to feel like I just like being a nuisance.
I'm hear to tell you that it is not you, it's THEM. Doctors don't aways look at the big picture. Please keep pushing until your questions are answered! Don't take the response of "well somethings we'll never know why", That's a lie. Go to someone else that does know!

Please know your not alone. So many here have and still are in the same boat as you. Ask questions here, do lots of research here and build your confidence about what is happening to you.
That alone will mentally make a big difference.
I hope my ramble helped a little.
Welcome aboard!

I'm mom to............... Little Farm Girl 9 yr old
Ibd (microscopic)
dx Juvenile Arthritis
dx Erthema Nodosum
Bladder and Bowel Dysfunction
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 2 wks
MTX started AGAIN on 11/21/17
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine,
07-31-2012, 01:03 PM   #10
Senior Member
Keepingfaith's Avatar
Join Date: May 2012
Location: Alabama
Welcome to the forum! So sorry this illness has been causing you so much trouble. I think the vast majority of us all have the same story: Months-years spent in pain with an undiagnosed illness only to be told we have Crohn's months/years later. Almost all of us have been in your place so don't feel alone!

Your story sounds very simmilar to mine in a lot of ways. Especially the GB part. Here, read my intro and see if this sounds familiar

Anyways, like others mentioned, it sounds like you need a colonoscopy, upper endoscopy and possible a pillcam since the possible disease location sounds like it is in the TI/Small intestine. It sounds a lot like you have Crohn's yet it also sounds like you have a cruddy bililary system. It could be that you STILL have gallstones leaking into your intestines and that can cause them to scrape against your intestines and even can cause bloody stools. In the meantime, I would ask your doctor about prescribing cholestyramine powder.

Something else to look into:

Hope you get taken care of soon! If you have any questions private message me. Also, go introduce yourself at the Undiagnosed Club here. They are a great bunch and can point you in the right direction!
Current medication:
Steroid suppositories
Canasa suppositories

Diet: Feeding via J-tube

DX: Crohn's Disease, Juvenile Rheumatoid Arthritis, Endometriosis, Gastroparesis

Previous Medications:
Remicade- Drug Induced Lupus, Humira, Prednisone,
Entocort, 6MP, Methorexate, Amitriptyline, Asacol, Flagyl, Apriso, Cimzia, Cipro, Sulfasalazine etc. You name it, I've tried it.
07-31-2012, 03:13 PM   #11
Join Date: Jul 2012
Location: london, United Kingdom
Omg your story sounds just like mine, the small bowel follow through is what showed up ulceration and a slight narrowing, but I got told that this test is not always 100% and they did not agree to repeat it as I requested, I said that if both the tests show the same results then that would make the results conclusive.

What is it with some of these doctors? Its frightening to think we have to rely on them. Thanks for your support and info it has helped.
07-31-2012, 08:43 PM   #12
David's Avatar
Join Date: Feb 2006
Location: Naples, Florida
Hi there and welcome

I'm sorry to hear of all the troubles you've had

Have they evaluated your biliary ducts? Those are basically the tubes that connect to your liver. IF you have a form of IBD like Crohn's (it sure sounds like it) then sometimes those ducts become inflamed which can lead to elevated liver function tests like you mention.

I sure hope they're able to get you a proper diagnosis soon. You deserve to feel better.

I wish you well. Please keep us updated.
It's good to be back
07-31-2012, 09:03 PM   #13
Forum Monitor
Trysha's Avatar
Join Date: Aug 2009

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Hi Teejay,
I see you are in the London area.
St Marks Hospital would be ideal for a proper work-up and diagnosis.
It is also possible that you could have an ascending cholangitis which can be related to Crohn's.
So sad to see you suffering when the help should be there for you.
Feel better soon
Hugs and best wishes
08-01-2012, 06:55 AM   #14
Join Date: Jul 2012
Location: london, United Kingdom
Hi Guys
Have been to visit my GP today she is really concerned over my weight loss, she has given me the prescription for the drugs that the pain clinic have reccommended and they are Pregabalin and Tapentadol, she has also given me some more Fortisip drinks and told me to take 2 a day instead of 1 for the next 2 weeks to see if it will help my weight loss a little. I don't know what I would do without my GP surgery, they are the only ones that seem to listen. Anyway will start this new medication today and see how I feel by the end of the week, oh yeah and I am also on Ciproflaxcin. Thanks for all the support everyone, at least this site makes you realise you are not suffering alone and there are always plenty more people suffering more than yourself.

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