Share Facebook
Crohn's Disease Forum » Your Story » Undiagnosed and needing help


06-16-2017, 02:16 AM   #1
Jackie1988
 
Join Date: Jun 2017
Location: United Kingdom
Undiagnosed and needing help

Hi everyone
I've just joined this morning, I'm currently suffering symptoms and have been since February I've been gettin so fed up with how I've been feeling. I've been to doctors they've put me on cocodamol for my stomach pains I've tried peppermint pills they done nothing, I've had an endoscopy but nothing showed up my biopsy was normal however I was having a good day the day I went for my scope I was given an enema to use before i went to hospital and after using it I didn't feel very empty but since I'd never had to use one before I just assumed this was ok but when I was havin my scope they couldn't go very far as said I wasn't completely empty. Then the doctor thought I might have an overflow problem which I don't think I have any overflow problem and had they wanted me completely empty should of got me to fast and take the drinking gels stuff to completely empty me. So they prescribed me fibre gel sachets which I haven't notice any difference on except being more bloated and gassy. Went bad to my doctor on Thursday I had kept a diary for a month of how I had been feeling my good days and bad days and I had been getting very sore spots down below and on my face and I had a very inflamed belly button also and he didn't even look at my diary said the spots were not connected to my bowel and has put me on more tablets for ibs (mebeverine) which so far haven't made any difference. I'm just feeling so fed up with how I'm feeling & how much it's affecting my life right now. I am sure I have crohns but because my results came back normal I feel like no ones listening to me. My doctor said to see how I get on with these new pills go bk in a month and if not any better or change he'll send me for a CTE scan but I'm jus feeling so low as when I got sent for my scope it took 4/5 weeks for an app then 4 weeks for my results so I'm think I have to sit in pain for another month just til he decides to send me for this scan which could prob take weeks to get an app for aswell just feel really down at the moment
06-16-2017, 05:11 AM   #2
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
Welcome. I am sorry for all the trouble you are having. I hope you cab get some answers soon. Let us know how you are.
06-16-2017, 09:11 AM   #3
scottsma
Senior Member
 
scottsma's Avatar
 
Join Date: Jan 2012
Location: Tynemouth, United Kingdom

My Support Groups:
Hi Jackie and welcome.You sound really fed up and with good right.It's sometimes difficult to get a result in the UK.it always takes an age,unless you go to casualty and even then it's not a done deed,but you must not give up.You know things are not right for you.Give the recent meds a go then go back to your GP and push for further tests.See another GP if you can,who might be more sympathetic and understand digestive problems.Not all of them do.Let's know how you get on.We do have an "Undiagosed" thread which might interest you.Feel better soon.
06-16-2017, 09:49 AM   #4
Jackie1988
 
Join Date: Jun 2017
Location: United Kingdom
Thank you both if I don't get sent for my scan once I go back to doctor I will definitely be going to another doctor. I will post how I get on. I will also have a look through the threads.
06-16-2017, 10:46 AM   #5
swimbikerun
 
Join Date: May 2017

My Support Groups:
I'm relatively new at all this myself but am seeing a trend in that so many people suffering with this stuff play an ongoing waiting game....waiting to get into a Doctor then waiting to get an appointment for a test. Waiting to get results from tests and then waiting for the Dr interpretations. Getting results and starting all over again since the test results were negative. And through it all pain that the Dr's seem to not be overly concerned with and that sidelines our lives. So for what it is worth, you aren't alone.
06-16-2017, 10:56 AM   #6
Jackie1988
 
Join Date: Jun 2017
Location: United Kingdom
I'm relatively new at all this myself but am seeing a trend in that so many people suffering with this stuff play an ongoing waiting game....waiting to get into a Doctor then waiting to get an appointment for a test. Waiting to get results from tests and then waiting for the Dr interpretations. Getting results and starting all over again since the test results were negative. And through it all pain that the Dr's seem to not be overly concerned with and that sidelines our lives. So for what it is worth, you aren't alone.
When I saw a doctor as my usual doctor was off he said to me I can put a rush on scopes but I don't think u have cancer so I'm not going to do that I left my app and went home and cried no I don't think I have cancer either but I'm in so much pain tht is affecting my life some of them have no idea what we're going through
06-16-2017, 05:38 PM   #7
eleanor_rigby
Senior Member
 
Join Date: Aug 2012
Location: Cheshire, England, United Kingdom

My Support Groups:
Hi Jackie,
When you say you had an endoscopy did the camera go down your throat or up your back passage? If the latter it sounds like it didn't get very far. The latter would a colonoscopy and it would need to get all the way to the terminal ileum for the best chance of getting a Crohn's diagnosis as that is where Crohn's most commonly affects. While this test can still come back negative for people who do have Crohn's, it is the gold standard for diagnosing Crohn's.
06-16-2017, 08:27 PM   #8
cmack
Senior Member
 
cmack's Avatar
 
Join Date: Aug 2014
Location: British Columbia

My Support Groups:
Welcome Jackie,

You have my support, I know IBD has both really upset me before and sidelined me as well. I'm not you but I have been a member of the undiagnosed club here pretty much since I joined. It has helped me to learn more and also to know that there are others in my situation. I hope to see you there. I also agree with what everyone else has said.

There are some very caring and understanding people on this forum.
Hang in there, it can get better.


Stay strong,

cmack
06-16-2017, 10:15 PM   #9
Jabee
Senior Member
 
Jabee's Avatar
 
Join Date: Oct 2016
Location: Massachusetts

My Support Groups:
When you say spots are you referring to skin ulcerations? There is another inflammatory disease that causes both genital and oral ulcers. I second the previous question about whether you had an endoscopy or colonoscopy. But in any case there is a lot of your small bowel that hasn't been imaged. And I'm puzzled about why your doctor didn't request both an endoscopy and a colonoscopy.
06-17-2017, 03:22 AM   #10
Jackie1988
 
Join Date: Jun 2017
Location: United Kingdom
Hi Jackie,
When you say you had an endoscopy did the camera go down your throat or up your back passage? If the latter it sounds like it didn't get very far. The latter would a colonoscopy and it would need to get all the way to the terminal ileum for the best chance of getting a Crohn's diagnosis as that is where Crohn's most commonly affects. While this test can still come back negative for people who do have Crohn's, it is the gold standard for diagnosing Crohn's.
The camera went down the back passage and I also don't think it went very far either
06-17-2017, 03:28 AM   #11
Jackie1988
 
Join Date: Jun 2017
Location: United Kingdom
When you say spots are you referring to skin ulcerations? There is another inflammatory disease that causes both genital and oral ulcers. I second the previous question about whether you had an endoscopy or colonoscopy. But in any case there is a lot of your small bowel that hasn't been imaged. And I'm puzzled about why your doctor didn't request both an endoscopy and a colonoscopy.
I already have a skin condition Hidradenitis suppurativa which I have looked into and could be linked to crohn but it's getting worse and mouth ulsers aren't linked to it but the red spots/lumps which can be very painful are but when I tried to talk to my doctor about it he said spots weren't connected to my bowel it's just very frustrating feeling like no ones listening
06-17-2017, 03:43 AM   #12
eleanor_rigby
Senior Member
 
Join Date: Aug 2012
Location: Cheshire, England, United Kingdom

My Support Groups:
The camera went down the back passage and I also don't think it went very far either
OK you would have needed to drink a few litres of foul tasting liquid (laxatives) that they prescribe in order for it to get as far as can. They cannot rule out Crohn's until it reaches as far as it can go.
06-17-2017, 03:48 AM   #13
Jackie1988
 
Join Date: Jun 2017
Location: United Kingdom
OK you would have needed to drink a few litres of foul tasting liquid (laxatives) that they prescribe in order for it to get as far as can. They cannot rule out Crohn's until it reaches as far as it can go.
I tried to explain this to my doctor he said when I go back in a months time if I'm not any better he's gona send me for a cte scan is this something that could help my case or is this pointless
06-17-2017, 05:23 AM   #14
DougUte
Senior Member
 
DougUte's Avatar
 
Join Date: Jul 2010
Location: Kaysville, Utah

My Support Groups:
In my case the cte did help with my diagnosis, but you need a good colonoscopy first. They did not have you properly prepare for it. Makes me angry for you.
__________________
Surgery Oct 12, 2010

Crohns Medicines:
Started Humira June 22nd, 2011
Increased to weekly injections on November 1st, 2016
Due to the insurance company, Humira ended on January 31, 2017.
Started Entyvio February 9th, 2017
Loperamide 3 capsules twice a day
Vitamin B6, B12, Folic Acid
Vitamin D3 10000 I.U.
Nature Made Multivitamin
06-17-2017, 11:22 AM   #15
chadetroit
 
Join Date: Mar 2014
Location: Livermore, California
I Concur with everyone here. You need to drink the prep solution (like a flavored saline solution) that will clean you out for a full scope. Secondly how is your diet? Never under estimate the power of what we put in our bodies. A cleaned up diet can help tremendously. Along those lines you can also look into a food allergy test to see what your body might be responding negatively to. Lots of support here so keep the communication open.



06-24-2017, 08:37 AM   #16
eastman18
 
Join Date: Sep 2016
Location: Sofia, Bulgaria
Get Calprotectin test done! It is VERY important.
Do blood work CBC + CRP + ESR. If everything is normal, go to psychiatrist. But get calprotectin test done!
06-24-2017, 06:25 PM   #17
DougUte
Senior Member
 
DougUte's Avatar
 
Join Date: Jul 2010
Location: Kaysville, Utah

My Support Groups:
Sometimes things don't show up in tests, but they are still happening. The problem she had is the doctor did not prescribe a prep before her colonoscopy. That is why the scope did not work out. No need for a psychiatrist here.
06-24-2017, 07:32 PM   #18
cmack
Senior Member
 
cmack's Avatar
 
Join Date: Aug 2014
Location: British Columbia

My Support Groups:
I don't see the need for a shrink yet.
06-26-2017, 11:42 AM   #19
OleJ
Senior Member
 
Join Date: May 2017
Location: Denmark

My Support Groups:
Jackie, eastman18 says something very important: get the calcprotectin test done. It is a simple stool sample that your GP can prescribe. It is very precise in diagnosing if you have active inflammatory bowel disease.
Did your GP talk about or have you take this test?
Reply

Crohn's Disease Forum » Your Story » Undiagnosed and needing help
Thread Tools


All times are GMT -5. The time now is 10:09 AM.
Copyright 2006-2017 Crohnsforum.com