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Crohn's Disease Forum » Support Forum » Please help- undiagnosed issues


11-11-2016, 10:25 AM   #1
charlottem
 
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Please help- undiagnosed issues

Hi there!

My problems have been ongoing for a while now and I should make it celar that I have EDS, POTS and a mast cell problem. I am also fed enterally through a PEGJ tube due to vomiting probably due to dysmotility.

My local hospital diagnosed me with crohns after seeing ulcers in the ileum, they put me on Budesonide then IV Hydrocortisone and then eventually prednisolone which seemed to cure the inflammation and helped the pain.

I then got stomach ulcers and bad stomach inflammation with bile reflux although the bile is most likely down to the dysmotility.

I was then referred to a hospital which have been appalling. They said I do not have crohns and its all IBS. They also said I do not have dysmotility even though this is clearly written on prescription forms. My dr was also a complete idiot and threw a pen in our last (and the last one EVER might I add) consultation when I brought up something she did not like. Well anyway, I refused to leave the area until my biopsy results were printed out and from what I can gather the professor in pathology seems to think my case is suggestive of crohns. I am fuming how this hospital lied as they said it wasnt when clearly the pathologist has said this.

I am now going through a flare without any dr! Im getting blood, feeling exhausted, getting bad lower right sided pain, nausea, mouth ulcers and the list continues really.

Just wondering whether anyone else has gone through the same thing. I'll try and post updates but from what i last heard the waiting list for my local team is months and months so looks like im alone for a while .

Heres my biopsy report anyway:

Small bowel: There is patchy mild acute inflammation

Ileum: Fragment of granulation tissue. Shows an area of active chronic inflammation with ulceration. There is patchy mild-moderate inflammation.

Colon: focal cryptitis

comments: features are those of a patchy mildly active ileocolitis. The appearences are non-specific

Gastric: focal mild increase in inflammatory cells within the lamina propia with occasional intraepithlial neutrophils and a single crypt abscess. The features are those of a focal active chronic gastritis suggestive of upper GI tract involvment by crohns disease

Mast cell numbers are also high

Thanks for reading x
11-11-2016, 01:11 PM   #2
ronroush7
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Hi. That is appalling what they did. Can you ask to be written in if they have any cancellations so maybe they could see you soon? Sounds like he needs to see you soon.
11-11-2016, 01:47 PM   #3
charlottem
 
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Hi. That is appalling what they did. Can you ask to be written in if they have any cancellations so maybe they could see you soon? Sounds like he needs to see you soon.
Hi there! thanks for your reply!
Yeah im going to asap. I'm ringing on monday (im in the UK so its out of working hours now) to see if my referral has been processed. Just glad to get out of that awful place!

She never believed me right from the start. I took pictures everytime i was sick because she never believed me- disgusting treatment- feel sorry for anyone else under the woman.
11-11-2016, 01:48 PM   #4
ronroush7
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I am sorry. I hope you get help soon.
11-12-2016, 05:22 AM   #5
scottsma
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Hello Charlotte and welcome to the forum....I'm so sorry you've been treated so badly.
I know here in the UK you can choose which hospital you want to attend.Most of us will do the convenient thing,and choose a hospital closer to home.I do,and I can only report good things about my local.Do a bit of research and maybe it would be beneficial for you to travel further afield.We all know how our bodies should behave,and you're obviously not happy.Please don't let your symptoms go on to long.Good Luck.Feel Better soon.Keep us updated won't you.
11-12-2016, 10:24 AM   #6
charlottem
 
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Hello Charlotte and welcome to the forum....I'm so sorry you've been treated so badly.
I know here in the UK you can choose which hospital you want to attend.Most of us will do the convenient thing,and choose a hospital closer to home.I do,and I can only report good things about my local.Do a bit of research and maybe it would be beneficial for you to travel further afield.We all know how our bodies should behave,and you're obviously not happy.Please don't let your symptoms go on to long.Good Luck.Feel Better soon.Keep us updated won't you.
Thanks for the post, I will try and keep updated as much as I can! Will be ringing around on Monday/Tuesday to see where things are regarding the appointment and then ringing my dietcian on wednesday as im not tolerating as much feed anymore.

I have decided to go with my local as they were very good before I was referred to the bad london hospital. If they are bad I am considering going private and possibly more sort of up north- Manchester maybe? I go to school full time so i try and do as much research as possible but as im sure you know its hard! Being ill is like a full time job!
11-13-2016, 04:41 AM   #7
scottsma
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You're right,it really does take over your life.But if you get the right care and meds.a normal life if possible.(most of the time) If you haven't already done so can I suggest you make a list of your symptoms,diet etc. and take it with you to your appointment.I'm assuming as you're relatively young,that you have family support,or at least someone to accompany you to your appointments.This disease is very stressful and that doesn't help one bit.I don't know if you've noticed but we do have a "young adults"thread which you might find interesting and helpful.....let's know how you get on,won't you.
11-13-2016, 06:39 AM   #8
charlottem
 
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You're right,it really does take over your life.But if you get the right care and meds.a normal life if possible.(most of the time) If you haven't already done so can I suggest you make a list of your symptoms,diet etc. and take it with you to your appointment.I'm assuming as you're relatively young,that you have family support,or at least someone to accompany you to your appointments.This disease is very stressful and that doesn't help one bit.I don't know if you've noticed but we do have a "young adults"thread which you might find interesting and helpful.....let's know how you get on,won't you.
Thanks for the reply! Yes I am really hoping to maybe get the inflammation treated and then not have as much pain (although I will have some unfortunately from the EDS and the fact the bowel is slower)and therefore be able to reduce the morphine dosage because last time I was on prednisolone I managed to come off the morphine! Everytime I seem to try food it literally means I have severe inflammation in the stomach and the last time that happened it took around 5 months of twice daily IV PPI's to get it back under control and now Im off the IV PPI the inflammation is starting to build up again. The local hospital thought the crohns has spread to the stomach and biopsy reports have suggested the same thing but my consultant clearly didnt look at that.

Yeah Im already keeping like a diary of symptoms that I write in and I have been doing that since around September.

My mum comes with me to most appointments and she is definitely going to be backing me up and wanting some answers/treatment

Thanks I'll take a look at that!

Of course Ill keep you all updated!
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