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Crohn's Disease
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Posted 4/12/2012 9:42 AM (GMT 0)
So, the general med team have been and are sending me home.. apparently the gastro consultant reckons that IF I had anything wrong it would have shown in the colonoscopy 6 years ago or the gastroscopy 4 years ago or during the laparoscopy 2 weeks ago..

don't worry that I am nauseous and vomiting, can't eat without extreme pain a half hour /1 hour later, that I can only JUST keep a small amount of liquids down, that I need morphine and endone to control the pain, that I have a bleeding bum, that I have a mouth full of ulcers, that all I want to do is sleep, that I am losing weight, that they have done NO tests other than bloods and now a stool sample to test for c diff which they reckon I won't have because I'd have other symptoms. :-(

*** do I do now?? I can't go home like this??

Why is the gastro consultant being like this?? the registrar wanted me to have an MRI test where they put barium down tube to look at small bowel but consultant said no. not necessary.. HUH!??

what do I do????

cry
Posted 4/12/2012 9:56 AM (GMT 0)
You fight that nonsense is what you do. List all your symptoms as you have here to everyone who will listen and tell them you are not ready for discharge. Just because your dr can't find anything doesn't mean you aren't sick, clearly you are. At least they will have to keep you until the c diff test comes back. Are you on prednisone or anything like that? Maybe that would help stabilize you. Good luck..
Posted 4/12/2012 10:03 AM (GMT 0)
they won't give me steroids without a definite IBD diagnosis and a crp in the hundreds! (crp is 12, normal below 5) :-(
Posted 4/12/2012 11:23 AM (GMT 0)
Leebie, You need to insist they run other tests. Something IS wrong with you, those symptoms aren't normal. Can you see another doctor? Or go to a different facility?

Keep us updated.

Hugs.
Posted 4/12/2012 11:46 AM (GMT 0)
thanks lamb.. I am thinking about going to a bigger hospital in another town 4 hours away.. they have better facilities (ie wouldn't have to wait for an endoscopy/colonoscopy).. What do you reckon? Even the nurses don't think I should be getting sent home.
Posted 4/12/2012 12:11 PM (GMT 0)
and so now they have given me so many laxatives trying to get me to poo (has been 3 or 4 days which I don't think is extreme considering I'm not eating or drinking and just lying in a bed) that I am living on the toilet tonight I think :-s
Posted 4/12/2012 12:44 PM (GMT 0)
Don't give in, I am going through the same thing!! I GO TO THE ER almost twice a week for fluids I have all the same symptoms and my GI doc doesn't want to say the word Crohn's instead I can just dehydrate and waste a way.  Spend hours in the er waiting for answers that never come, I have had 4 different CT's  endoscopy,colonoscopy etc.. smhair idea   and they just don't know what it is...AMAZING isn't it?  I am 33 they gave me a complete hysterectomy b/c that had to be what was causing this (female issues) Wrong AGAIN...now I can't have kids AND I am sick as hell been in bed most every day for months!!!! *** my body hurts so badly I cry all the time b/c there is still no answer.  But I am going back to the ER today and they WILLL diagnose my Crohn's once and for come hell or high water!!! DON'T GIVE UP!!!!
Posted 4/12/2012 2:35 PM (GMT 0)
lullabelle,

Welcome to the forum.

Wow, you have been through hell and back...I'm so sorry.

They gave you a complete hysterectomy as a way to solve your symptoms, that's really unbelievable.

Have you thought of going to a Functional Doctor to get a "whole picture" diagnosis? That would be my suggestion.

What do you think?

Posted 4/12/2012 2:45 PM (GMT 0)
you had a colonoscopy 6 years ago? Have you had one recently? My GI scheduled all my lab work and the colonoscopy at one time. Which is really good because my all my blood work came back pretty normal at that one time. It didn't really show the inflammation but when i went for the colonoscopy it came back a mess. and i wont be surprised if i have another one soon. The doctor said he was surprised about the lab work but i def have it because of all the colonoscopy and the biopsies that he took. I am actually doing worse now then i was when he ran all those tests. My lab work still looks ok and i just did a ct scan and it came back showing normal inflammation what ever that means. So i know what we will have to do is go back and do another colonoscopy again soon to really figure out where i am now. If you haven't had one in 6 years i would def ask for one again asap.
Posted 4/12/2012 6:02 PM (GMT 0)
I told you that the same thing happened this summer to me!! THE SAME EXACT SITUATION except the GI on call, who was a...bad word, gave me a scope & it showed no inflammation. Needless to say, I got a reccomedation to a GI way out of town who is known to be the best of the best, & within 4 months he scoped me & I saw all the nasty inflammation in my stomach & colon. Turns out the steroid shots threw off past scopes probably. Don't give up till you get proper treatment! It could be a severe form of IBS because my mom sounds a heck of a lot like you(she has IBS). I kind of doubt it's IBS with you though. I think it could be Celiac, a type of IBD or several food allergies. I know of a boy who last 50 pounds at the age of 9(he was already chunky) & it turned out, he just had a HECK of a lot of food allergies.

It took me 3 nuerologists, 1 Rhuematologist, 4 GI's & 2 pediatric doctors till I found my GI who believed all my symptoms. If it wasn't for my SBFT showing I had a "mass" & getting scoped, I would have never knew I had Crohn's!
Posted 4/12/2012 6:10 PM (GMT 0)
I would ask for an "Upper GI small bowel follow through." This is a type of xray for the entire digestive system. If there's inflammation or narrowing somewhere, it often picks it up.

Ask them to test for celiac too—by biopsy during an endoscope. And definitely go to another hospital, if that's what it takes.

Also for those who haven't been diagnosed, have you been tested for H. Pylori? This is the bacteria that causes stomach ulcers. It can cause devastating GI symptoms too.

Hope you get some answers soon!
Posted 4/12/2012 8:56 PM (GMT 0)
Same symptoms have been here. I always posted that I am not satisfied with my GI, I saw many others and then returned to him. I have had 3 colonscopies, 3 upper endoscopies, one enteroscope ad 1 sigmoidoscopy, 1 SBFT, 3 CTs and 1 MRI in 5 years. All biopsies showed mild active ileocolitis and chronic proctitis along with gastritis, duodenitis and GERD. For my GI, this is nothing and I should not be treated. However, when I flare up and he sees how I suffer, I don't know he has mercy with me and treats me as if I'm a real diagnosed IBD patient. He told me I had Crohn's, then Crohn's and IBS and finally changed diagnosis to atypical colitis. I don't argue with him as long as by the end of the day, meds are the same except that he won't prescribe biologics as there are no ulcers.
I'm telling you all this because I know how painful it is when you suffer and no doc believes you. You seek his help and he turns you down. I kept complaining and quarreling sometimes with my GI until he got convinced that I need his help. So, fight your own battle. Ask to see another GI. It's your right. I'm neither a US nor a UK resident so I'm not familiar with the medicare policies but when my mum was hospitalized and we did not like her doc, we asked the hospital officially to change the doc. If you are sick, don't get discharged until you get the proper treatment you need.
Hope you feel better soon:)
Posted 4/13/2012 8:58 AM (GMT 0)
home.. reluctantly. after nearly two weeks in hospital with nothing but 1 blood test, 1 stool sample to check for c diff and morphine and endone to control the pain. They have sent me home with PANADOL. some of the nurses and a few of the docs have said that I am well within my rights to re-present if the pain continues so that's what we shall do.. maybe to townsville seeing as they have working machines :-s The decision to not do any tests was based on a consultant (who didn't even see me) saying that because I had had a colonoscopy 6 years ago that I'm fine :-s one of the docs wants me to go to GP on monday and ask for the steroids as a trial to see if they help.. he thinks he'll be open to it (he knows him) and he said a short course won't hurt me. ?????
Posted 4/13/2012 12:04 PM (GMT 0)
oh minnietoy.. if you have ileocolitis doesn't that mean you DO have an IBD?
Posted 4/14/2012 2:05 AM (GMT 0)
Nope Leebie. Like I said, a lot of things can cause inflammation in those areas like parasites & when you see the granulomas in the biopsy, that's typically how you know if you have CD.
Posted 4/14/2012 3:39 AM (GMT 0)
you need to find another gi!
Posted 4/14/2012 4:02 AM (GMT 0)
Yeah, find another GI. The one saying you're fine based on a 6-year-old colonoscopy sounds absolutely useless. You need tests done.
Posted 4/14/2012 5:27 AM (GMT 0)
unfortunately in this hospital you don't have the option of a second opinion .. have to wait 9 mobnths to see another one.. which i will do but doesnt help me right now.. had a rough nights sleep in my own bed.. have woken up with a slight fever.. don't really want to go back in but don't know if I can cope with this pain :-(
Posted 4/14/2012 10:35 AM (GMT 0)
dial a doc been.. SHOCKED that they sent me home with IV. And disgusted that no tests have been done.. not even a scan. took it out and is sending me in to hosp because I am severely dehydrated or in her words "dry as a chip' lol

Her referral letter says

provisional diagnosis - colitis? gallstones? nausea/vomiting
treatment - needs IV fluid rehydration
clinical notes - 36 yo (she didn't believe I was 21 lol), cramping abdominal pain. not able to tolerate any oral intake 5/7. severe cramping abdominal pain, RUQ & periumbilicus + pr bleeding & mucousy stool
o/e febrile 37.7 not *something that I can't read* generally well.
plan hospital. BS ++

so.. long story short. I am to go into the hospital again and request the patient liason officer as well.
Posted 4/15/2012 12:21 AM (GMT 0)
 

     What kind of brain-dead incompetent moron was this GI consultant??! You do not live in the US I take it? I would never have put up with crap like this!

   Hope you get answers soon!

   btw, Welcome to HealingWell.

    Sincerely,

       Matthew

 

Posted 4/15/2012 12:56 AM (GMT 0)
I went through the same thing as you I went to dr after dr, only to be told you are a nervous person. You need anti depressants. My sugar was low, my vit d low. I had pain in the bones and the stomach, blood and constant diaherra. I was loosing control of my bowel and taking 9 immodium a day. I got mad, I found a highly recommended gastro dr. I walked into his office and said if you cant listen to me and find out whats wrong with me im leaving, and no colonscopys, I had one and nothing showed but minor irritation. He was amazing, he did a capsule endoscopy I have ulcers in my small bowel. He waited till I was real sick then did blood work which came back positive for mild to moderate IBS, he said I have chrons with colitis, but if I had not got angry I would still be in the dark, dont stop trying.
Posted 4/15/2012 1:36 AM (GMT 0)
have any of you had the faecal calprotectin test?
Posted 4/15/2012 2:58 AM (GMT 0)
Leebie 3:
It sounds like you may have cancer (don't be scared) where the small instestine meets the large intestine, or something like that. It is major surgery. However once they get it out there is no follow up, and you can get on with your normal life. No radiation, no chemo. Just a bad surgery where they might take 1 foot of your intestine out. It heals in about a week. They do not make or have an endoscope large enough to reach down there. Xrays are not that definitive. Find a new doctor.
Posted 4/15/2012 3:25 AM (GMT 0)
I do not think have cancer... If it were cancer I surely would have carked it or been extremely sick by now.. after 6 years. I have had this pain before (this severely I mean) in approx 2008 which is when they took my appendix out even though it looked fine in an effort to source the pain.. the pain still went on for a few weeks after that but gradually tapered off (after a couple of months in total) and I was back to what's normal for me :-) I'm sure the same will happen this time.. I don't think the mouth ulcers or sore hips or some of my other symptoms would fit with a diagnosis like that either but thanks for your input :-) I must say I'm a bit confused why you would say that though? A colonoscopy DOES reach the terminal ileum..

Post Edited (Leebie3) : 4/14/2012 9:33:45 PM (GMT-6)

Posted 4/15/2012 3:35 AM (GMT 0)
THEY SENT YOU HOME WITH AN IV?!?! That is rediculous!

I know I'm a lot younger than you but I want to kidnap you & just tell you, in person, (it always helps to be told in person), that you are not alone & SO many of us have been treated like crud from GI's or other specialists who think they are practically God! The thing that always made me feel better when doctors denied something was wrong with me, was picturing their reaction when I find them & tell them one day "You know how you said nothing was wrong with me? Well turns out I have Crohn's from mouth-Duodenum & from my TI to my rectum. Funny how finding a good doctor changes everything." Trust me. IT FEELS REAL GOOD. :)

Your chances of having JUST IBS is SLIM. I hate that diagnosis anyways because it's a diagnosis of exclusion. As House would say:

" 'Idiopathic', from the Latin, meaning we're idiots 'cause we can't figure out what's causing it."
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