Not quite Diagnosed

[Campbell]

Hi...my name is Jan...I'm 54 and have had quite frightening symptoms of collapse and weakness and symtoms of an inflamed bowel for a year and half...since last march Crohns has been suspected but my colonoscopy was negative ...my intestinal symptoms have improved on gluten, dairy free and low histamine diet but now i am getting lots of awful inflammation of my eyes, face and neck. I have been referred to a Crohns specilaist in London who think i probably have Crohns because my caloprotectal levels are so high and he is going to do a capsule endoscopy to look at my small bowel. Im on really large doses of piriton for my skin inflammation... feeling really low with being so sick and not having a diagnosis so I cant get given the antiinflammatory drugs I need...

Am having to retire from my academic career as its too stressful...does the medication when you are finally diagosed make a difference? I can't remember what it feels like not to feel weak and ill and be scared about my health... Im used to running and swimming and can't do any of that now..its really affected my sense of self, my feelings of being attractive etc...Last March I really wanted a negative result, now I want a positive one so I can get treated properly...

 

[Angrybird]

Hello Jan and welcome to the forum.

I am sorry to hear you are feeling so poorly. I would say it is possible for many that with the right treatment a person with crohn's can be feel well again. Out of interest when the colonoscopy was done did any biopsies get taken? I am pleased to hear about the pill cam so the small bowel can be looked at. Also it may be worth asking the doc to do a full vitamin level check, it could be that some of the problems you are having are to be down to low levels which is common in people with an IBD like crohn's.

Please do also check out our undiagnosed sub forum as well, there is a great bunch here to have a chat with. I will be keeping fingers crossed that you can get a difinitive answer soon, please keep us updated on how you are getting on.

AB
xx

 

[Campbell]

dear AB,

thankyou for your reply.... I went to A&E last night and they gave me some steroids to help the uticaria of my face. I will follow your advice and ask the Doctor...are their any vitamins in particular I should have extra of?...I am taking ultra inflam X which my nutritionist has given me along with lost of probiotics which has really helped my bowel symptoms to stabilise a bit...but the pain is now in my body and muscles with lots of inflammation of my skin ...I dont have any proper allergies to food but am waiting to have food intolerance blood scan and am on a gluten, dairy free and low histamine/sugar diet so cant really give up any more foods...I will check out the sub-forum...

They took biopsies during the colonoscopy which were negative but could not get into my small bowel...Up until now I have only seen surgeons. Unbelievably they discharged me last month saying they could find nothing wrong. the GI i am booked to see in london thinks I have Crohns in my small bowel and he is going to do a capsule endoscopy...my caloprotectal levels were 700, so my bowel is definitely inflamed. I have to wait for October for this jan

 

[Angrybird]

Hi there, the more common vitamins to test for would be B12, D and Folate but ideally a full panel should be done just in case. Also ask the doc for the specific levels and check them here, some docs are happy to leave things if you are at the very low end of the normal range but this can still mean that it's low enough to cause problems.