Crohn's Disease Forum » Your Story » Undiagnosed and needing advice

02-09-2017, 08:12 AM   #1
Join Date: Feb 2017
Location: United Kingdom
Undiagnosed and needing advice


I've been putting of posting for some time now but I have actively been reading other peoples stories to try and shed some light on what I'm going through. I aplologise if I'm posting in the wrong place. And I aplologise in advance for the long post!

Here goes.. I turned 30 in December and I've always been relatively healthy but for the last 18 months I have become really poorly.
It started 18 months ago with my appetite completely disappearing.. within 6 months i lost 21 lb unintentionally, I became really weak, bloated at times and tired, the smell and sight of food made me nauseous. On top of this I had really bad internal haemorrhoids and pains on right side of my lower abdomen.

I had trouble with my vision and numbness in my feet/toes.

I had blood tests done and they said it was the worst case of b12 deficiency they've ever seen at my doctors surgery and I was booked in for 3 b12 shots a week for 3 weeks. I was also referred to hospital for the haemorrhoids.

I had a colonoscopy and the haemorrhoids removed without any sedation at all, which really left me quite traumatised so I never went back to my follow up.

I still had problems with my BM's but didn't do anything about it. And I still have skin tags.

Fast forward to about 6 months ago and I've been getting worse and worse. I haven't had a normal BM in 6 months. I've had terrible D. I'm really weak, I have had a sharp stabbing pain under right side of my sternum that wakes me every morning. It feels like I'm being impaled or like someone is twisting a knife. I'm having an awful lot of mucus in my BM's, strange coloured Bms, pain in my abdomen, urgency to go the toilet, chronic fatigue and terrible pains in my joints. Undigested food in my bm, my gums hurt, my eyes get blurry.
All of these symptoms seem to 'flare' up at once.

I went to the doctors at my new surgery (I moved to another city for university)
They did blood tests and stool tests to rule out parasites, coeliac and H pylori.. they all came back negative.
My bloods came back abnormal with my white blood cells raised and my Calprotectin levels were returned as abnormal.

So I was referred to the hospital, waited a long time for my appointment. When I went to the appointment it was at the IBS clinic and the doctor just assumed I had IBS without checking anything. I was given fibre gel, prescribed mebeverine, amitriptyline and was referred to see a dietician. It wasn't until I asked for an endoscopy that they also referred me for that.

I had to wait months for my upper endoscopy and when I had it done they said it looked clear and sent me home.
I have a follow up appointment at the end of the month and assumed they would have taken biopsies to check for inflammation but I've found my discharge letter from the endoscopy and it says 'normal' next to everything and then "A CLO test was taken for helicobacter pylori.. the test was found to be negative"

I'm just wondering does that mean they haven't even taken biopsies for inflammation? And have only tested me for something I already know I haven't got?

I feel like I'm going crazy and nobody believes me that I'm not well! I don't feel like I have IBS.
I don't really know what to do next as this is really affecting my daily life, I can't do the things I love never mind the daily things like chores etc.
It does get manageable at times but when it flared I can't do anything at all.

So fed up! If anyone has any advice it would be really appreciated. Sorry for the long post!
02-09-2017, 09:38 AM   #2
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ronroush7's Avatar
Join Date: Oct 2013
Location: vienna, Virginia

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Welcome. I am sorry for all you are going through. I would ask the doctor to do a colonoscopy. They normally take biopsies during that. Keep at the doctor until you get satisfactory answers. Let us know what happens.
02-09-2017, 04:59 PM   #3
bowlerr's Avatar
Join Date: Feb 2017
Location: Alamogordo, New Mexico
Also maybe an ultrasound for gallstones. The upper right abdomen pain sounds exactly what I went through before I had to have my gallbladder removed.
Rob (37) dx 1/1/17 - Status: Suffering bad
Current Meds:
Pentasa 1000mg 4x/day
Budesonide 9mg 1x/day
Prednisone 20mg 2x/day
Protonix 40mg 2x/day
Oxycodone Hydrochloride 5mg every 4 hours as needed

None yet, but still very new

Failed Meds:
None yet, but still very new

All Penicillins

Gall Bladder removed 12/2010
02-09-2017, 08:27 PM   #4
Lady Organic
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Lady Organic's Avatar
You must have a consultation with a gastroenterologist asap. raised calpro is a indicator of colonic inflammation, not exclusively IBD inflammation, but its a marker which should be taken very seriously. What you need is a colonoscopy asap. Do the best you can to get that, maybe at the clinic you used to go for endoscopy. I cant believe they did not propose colonoscopy with raised calpro, chronic diarrhea, gums, joints and eyes problems and pain in the lower right cadran. This is one of the most typical spots for CD, the ileum. Im not saying you have CD, but you must be checked for it in the colon and ileum imo with a full colonoscopy.
It would be also a good idea to consult at least an optometrist (very fast to do and not very expensive), who can diagnose eye disease so to be reassured that nothing important is going on in your eyes or to treat it if anything is going on. Good luck.
''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

Diet: ''IBD-AID'' : organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).

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