Just got back from consultant

[fosterschick]

just got back from consultant

jus come back from my consultant ( in ther all of about three mins !! ) to be told my large bowel looks ok so its ibs no need to look at small bowel !! when i told him my blood results show auto immune and i was bleed he shrugged his shoulders and said its ibs deal with it !!!! sssooo mad !! i would love it to ibs but how can he be sure wen my bloods indicate its not and my bowel habits and most importantly localised pain is getting worse , i just wish they would listen .... three minutes what a joke :mad2:, back to gp for referal to gi this time he said < gp is lovely wish he was the consultant !! x

 

[Cat-a-Tonic]

I'm glad you're going back for a referal to a new GI, it sounds like this one isn't very good. You're right, blood is not part of IBS and if they've found something in your bloodwork indicating autoimmune illness then that's another clear sign that it isn't IBS! Crohn's can manifest anywhere in the digestive tract, literally anywhere from mouth to anus, and it usually does appear in the small intestine, so that is the best place to be looking. Good luck, hang in there, and keep fighting for answers.

 

[fosterschick]

Thanks cat-a-tonic xx I'm jus so mad he didn't listen , I wud love it to b ibs from t point of view its not going to damage my bowel but how can this man be sure if he doesn't listen to me and has only seen my small bowel ! Xx grrr makes me so mad that u wait 8weeks for 3mins of arrogance !! X defo going back to my lovely gp tomorra for ref to gi xx hugs to u too x oh this man sed I cud have a crp test and if that came back negative its defo not crohns !!

 

[allieinwonder]

What part of your bloods indicated AI illness? Did you have a positive ANA? Positive ANA does NOT indicate IBD. It usually indicates Lupus, RA, mixed connective tissue disease, etc. It sounds like you need to see a rheumy as well! Lupus can cause inflammation of the bowels as well, which causes the IBS like symptoms.

I'm glad you are fighting this! My rheumy has decided my blood work indicating AI means nothing as well. I asked to be put on steroids (pred) to get some kind of help and see if I respond, and I did, which helps further show mine is AI as well. Don't give up!

 

[Bowmancrew]

I had a gyno dr tell me that" with ibs you jut have to learn to live with it. And when the pain comes just tell yourself it won't last long. " Needless to say I will not be seeing him again. Pain is not something you live with. It is a sign something is not right! Sorry your dr treated you so poorly.

 

[fosterschick]

hi thanks for replying , allieinwonder im not sure of the tests , here in t uk the docs seam to hold all of your info and you have to apply to see your tests results ( which i am doing ) and as for ibs i would loooovvvvee it to be ibs whilst v painful its not damaging but my GP sent me to a consultant because me of the following reasons
* the 'flare' has lasted 6months and still going
* ive lost 15 pounds
* im bleeding
* bloods are low in protien and show inflammation ( Albumin and amylase)
* i am in more pain when i eat and feel very sick
* and the biggie the doc told me is IBS i have two very tender localised pain areas which my GP said IBS is rarely localised as its a motility problem

flipping jumped up consultants are so reluctant to listen to the person its acutally happening to !!

bowmancrew have you had any diagnosis yet , and allieinwonder i even asked my gp anout lupus from reading your story and he has said to ask the GI about it when i see them xx
thanks all xx

 

[Bowmancrew]

I was 2 wks ago when my Prometheus came back positive. However when I went to the gi on thurs he said he wanted me to get another blood test that give a more definite answer. So I am waiting on those results. So I am still in limbo.

 

[fosterschick]

what prometheus ?is that t blood test you have metioned? , its awful been in limbo , would rather know then get it sorted but from what i have learnt on hear that could take some time ................. , good luck be sure to let us know , have you had any looks inside ?? bariums , scopes ect ?? x

 

[archie]

Hi fosterchick that's reallly frustrating for you but def sounds like you need a second opinion. My large bowel has always been unaffected (thankfully!!) but the small bowel was wrecked. Did you have any tests like a colonoscopy etc? I think it's fair to say you could do with some more tests before they diagnose you with IBS.

 

[fosterschick]

thanks archie , my doc thinks its small bowel cos of pain area (lower right near tummy button--also had appendix out already lol ) but consult didnt listen , jus had barium enema ( large bowel only ) and sigmiodoscopy 4 years ago , how was your found archie , defo going for another opinion , have requested all my medical notes too xx

 

[StarGirrrrl]

The prometheus is a blood test that looks for IBD, there is debate as to how reliable it is though. Unless things have changed we don't get it in the UK as it is not available here. I don't think you can even get it done privately here!

Amylase is a pancreatic enzyme so related to your pancreas, so an ultrasound of those organs may be worth requesting. Or a stool sample can get a better reading for amylase.

I have no idea why they do that stupid flexi sig (and I was told IBS after a normal one of those 5 yrs ago now- in a right state today), why not go the whole hog and have the colonoscopy!!

 

[Bowmancrew]

I agree that limbo is no fun. I want to just get moving in what ever direction. I had a colonoscopy 6 years ago. It was at my worst. The only thing they found was a pre-cancerous polyp. So that meant every 5 years I need to get a scope done so I just had one done in July which was clear. I had an endoscope about 3-4 years ago. That was for what we thought was a stomach ulcer. But that was clear as well. They said it was just ibs. That was a different gi. He never ordered blood work. He was happy telling me it was just ibs and eat more fiber. So I switched. This dr is doing a good job trying to figure out what is wrong. I have a sister and a daughter with a wheat allergy. I just tested as having a rice and yeast allergy. If I do have crohns it is just in the small intestines as well. Until may my pain was mostly in my upper left abd. Now it is a bit of all over. I hope you can find a dr who try's to help you.

 

[fosterschick]

good luck for you too bowmancrew thanks for getting back , im super happy with an ibs diagnosis providing all areas have been looked at and its not a guess lol xx

 

[archie]

thanks archie , my doc thinks its small bowel cos of pain area (lower right near tummy button--also had appendix out already lol ) but consult didnt listen , jus had barium enema ( large bowel only ) and sigmiodoscopy 4 years ago , how was your found archie , defo going for another opinion , have requested all my medical notes too xx

Hi fosterschick I had a CT scan as I was having original pain around my belly button then it settled in the Right lower quadrant it showed bowel wall thickening at terminal ileum I then had an abscess form shown on 2nd CT which required emergency treatment as CRP was 280 following that I had a small bowel series and colonoscopy all conclusive of crohns. Finally I had surgery to remove the damaged bowel following the abscess as meds didn't work. I think you def need to request a colonoscopy.

 

[fosterschick]

colonoscopy rightio i will jot that down , i have so many questions lol, does colonscopy see in the small bowel ?? im having a small bowel enema on the 8th dec , hoping thats has some answers , eating liquids at the mo cos this helps the pain < thanks for getting back sound like you had a bad time of it all too xx

 

[allieinwonder]

Colonoscopy gets up into the very end of the small bowel (called the terminal ileum, very common to have crohn's there), but that's it.

Small Bowel Follow Through will only show abnormalities like inflammation and really large ulcers. It can't pick up everything unfortunately.

 

[fosterschick]

super thanks allieinwonder , i have a small bowel enema so i guess that will be looking at all or most of the small bowel xx