Undiagnosed and needing help

[Jackie1988]

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

 

[ronroush7]

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.

 

[scottsma]

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.

 

[Jackie1988]

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.

 

[swimbikerun]

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.

 

[Jackie1988]

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

 

[eleanor_rigby]

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.

 

[cmack]

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

 

[Jabee]

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.

 

[Jackie1988]

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

 

[Jackie1988]

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

 

[eleanor_rigby]

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.

 

[Jackie1988]

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

 

[DougUte]

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.

 

[chadetroit]

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.

 

[eastman18]

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!

 

[DougUte]

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.

 

[cmack]

I don't see the need for a shrink yet.

 

[Deleted member 431298]

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?