So frustrated....Please help ?

[YJ120]

Hi All,

I'm hoping to get a few answers or help here and thanks in advance.

I was hospitalised last year after loosing 1 and a half stones in a few weeks and going to the toilet 20+ times a day. I was 8 stone 6lbs and was so frailf. Prior to that I can remember as far back as at least 3 years ago where I have always had diahrrea and also regular vomiting and stomach pains. I went to the Doctors a lot and never got anywhere so just gave up and lived with it. Until it got really bad in Oct/Nov 2010 and was hospitalised. That was November 2010 and I was in there for 9 days.

I was on drips and steroid drips, they did several stool (well diahrrea!) samples, x-rays, a stomach camera and a colonoscopy. The stomach camera came back ok. As soon as I'd come round from the colonoscopy the Consultant told me it was chrons and handed me a chrons leaflet.

I went back for a check up at the beginning of December and was diagnosed with chrons. They did a letter for my works and I began to accept it. I was put on steroids and although all the symptoms of them were horrid they made me feel a bit better (I got the biggest moonface ever!).

I went for my next check up and saw a different consultant this time who then told me he didn't want to label it yet as he wasn't 100% sure it was chrons and it could of been infection! This is after I've already been told it was chrons and had started to accept it and had informed everybody and work. The previous consultant I saw said I'd go on medication at this point. But instead I was told to stop taking my steroids (taper down over 12 days) and see if the diahrrea came back - well in his words 'if you're not going to the toliet 15 times a day with bloody diahrrea, you don't need to come back' (note - I've never had blood in it!) - If it did go and see him. This is the same Consultant who told me I'd need a colonsocopy in hospital and then the day after told me he didn't realise I'd already had one - when on the day he told me I needed one he was looking at the photos from it and I told him I'd already had one!!! He is very arrogant and rude and he shows mo sympathy at all!.

So now I still don't know if it's chrons or colitis. My questions to him was why did the camera consultant diagnose chrons straight away and why did none of the many stool samples show any form of infection? His reply was 'I'm the expert, trust me'!! That is not good enough - I'm going through hell here.

Since I've stopped taking the steroids which is about 7 weeks now, I have been constantly ill. I'm not on any medication. I've had so much time off work, which causes more worry and also money worries. Since stopping the steroids, I've had problem after problem with my eyes being swollen and irritating. My joints are absolutely killing - I'm hobbling around like I'm 90 (I'm only 27!). I have a huge skin rask that is getting worse and worse around the top of my back. my arms and my chest. I have had so much rumbling of the stomach and lots of wind. I've had diahrrea on and off but not constant. I feel totally drained - I have no energy at all. I am like a zombie in the morning, but come round a bit later in the day - but am still energyless.

I am at the end of my tether with it all - I feel like I'm going mad. I'm so ill and drained but feel like no one is listening. I've been to my doctors but because I'm under hospital care they kind of say I have to see what he says. I'm that worked up with it all and I'm actually scared to see that Consultant again due to how he is, that the doctor gave me diazepam to calm me down. How long am I going to have to go through this? Is it possible to have all these symptoms and have chrons? All the Consultant talks about is bloody diahrrea and chrons - never about all the other symptoms. I've never had blood in my stools.

Has anybody else been through all this? I understand that if its not chrons then lucky me, but how can I be diagnosed and then be told it might not be and then be left to be so ill? Please help.

Thanks in advance and sorry for the huge post!

Yvette xxx

 

[Trysha]

Hello Yvette,
You have certainly been having a hard time and it is unacceptable for you to have been told by one consultant that you have Crohn's and then another arrogant person to tell you that you do not.
Is it not possible for you to see the first consultant again who diagnosed it in the first place?
A patient has the right to see the doctor she wishes and it is too bad that follow up is so slip shod.
Other than that is it possible in your area to find another GI consultant.?
You do not have to accept such shoddy and uncaring treatment.
There is a person on the forum who may come from your area, her name is Astra 101
and she may be able to help you.
You could contact her through a private message to:
Astra 101.
Hope you get to feel better soon.
trysha
Wish I could be of more help

 

[xJillx]

Hi Yvette! Bloody D is not always associated with Crohn's, and I am shocked your doctor is so focused on this one symptom. To be honest, I am one of many on here who don't suffer from regular D (*knock wood*) and many other Crohnies actually suffer from constipation. I think your doctor needs to be focusing on the symptoms you do have that are certainly an indicating Crohn's: eye issues, skin rashes, fatigue, frequent bathroom trips, etc. These are all symptoms of Crohn's. Another big indicator is inflammation and its location. Was inflammation found during your testing?

I know you must be very frustrated, but don't give up. You need to keep fighting to figure out what is going on with your health. I wish you luck and keep us posted!

 

[Nancy Lee]

Hello Yvette,

First I just want to welcome you to the Crohn's Forum!
One of the most difficult to diagnose or misdiagnosed diseases
is Crohn's or Colitis or Crohn's Colitis.
Usually there is no bleeding or less bleeding with Crohn's.
But you are showing so many Crohn's related symptoms.

Please go back to the doctor you feel most comfortable with.
Insist on getting a proper diagnosis.

Wishing you all the best.
Healing hugs~Nancy

 

[silveyk]

Yvette,

It sounds like you may have Crohn's-related arthritis and the typical Crohn's rash. Your steroid taper may have needed to be longer in duration. As for your diarrhea, I suggest you try loperamide. It is a drug from the opioid family that slows the bowels without have the side effect of making you loopy (high). Also, I might suggest drinking a lot of water or pedialyte (a replacement drink filled with electrolytes for children). Do not let yourself get dry.

Dr. S (my spouse has Crohn's)

 

[ev088u]

Yvette,

This is exactly what happened to me (appart from the muck around by the doctors) Had the exact same symptoms, i have crohns.
Steriods kept me out of hospital for 8 months. Maybe its worth going back on them?
And trying 'another' new specialist?
i was constantly drained, worse in the morning, getting slightly more eneregy in the avo, but not enough to do much at all. I felt as if walking from my bedroom to the lounge room was a marathon (still am when flare ups happen) My stomach sounds like its going to jump out and eat me some days. Very noisy!

i know its scary as hell, i wasnt diagnosed untill after my colonscopy either.

GOODLUCK!

 

[YJ120]

Thanks xx

Hi All,

Thank you so so much for your support....it has helped me so much and my anxiety levels have dropped and I don't feel like I'm going mad now!

Trysha - thanks so much . You're right I shouldn't have to put up with it. I am seeing the arrogant consultant tomorrow and if he is the same and gives me the 'trust me' etc answers I will be phoning my Doctor straight away to refer me to another consultant. I will try to PM Astra 101 - thanks so much for that. xx

Jill - again thanks so much . I've got a list of questions ready for tomorrow for nthe consultant and one of them is why is he so focused on diarrea. You asked if imflammation was found during testing and yes it was it showed in my bloods - my white cell count was sky high and the colonoscopy also showed it. Thanks for your comments and I will keep fighting. xx

Nancy - Thanks so much to you too . You're right I do need to be strong and get a proper diagnosis. I will push so hard for this tomorrow. I've never had blood in it - hopefully he'll listen to all the other symptoms I have. Thanks xx

Silveyk - Thank you so much for your post . I'm having a terrible joint day today - even my finger joints are hurting! I'll ask the consultant about chron's related arthitis. I've even taken photos of the rash over time so he can see that it's not going and is just getting worse. Thanks xx

ev008u - Thanks so much . It helps knowing someone has been through the same as me. I'm convinced I have chrons. Guess I'll have to see what he says tomorrow. Then if I don't get anything back I'm going to see another consultant as you've suggested. In fact even if I do get answers from him I'm still going to request to continue treatment under another consultant. I'll see what he says about the steroids - I hate being on them, but if they help me feel better then I'll do it.

So the energy thing or lack of it is normal. I feel like I'm 90, hobbling about! lol. And thanks about the noisy stomach - mines the same, it's terrible! Thanks so much xx

ALL - thanks so much you wouldn't believe how much your posts have helped and made me want to continue fighting. I'll let you know how I get on with the Consultant tomorrow .

Yvette xxxxx

 

[Nancy Lee]

I am so pleased we could be of some help Yvette.
We are here to support one another in any way we possibly can.
Please let us know how things are after your appointment.
Big Hugs~Nancy

 

[YJ120]

Consultant Visit!

Hi All,

Well I've been to see the Consultant today.....he asked why I appeared anxious .... so I told him he's arrogant and rude! He's still saying about infection and it not being chrons. I've been through all my symptoms with him and he just kept saying it could be follow on from infection! Grrrrr!

However on the plus side he's booked me in for another colonoscopy on Friday. He's doing it. He's so adamant that it's not crohns - all because I don't have diarrea!

I asked him why he is so focused on diarrea and he said that is the main symptom! I told him it is possible to have chrons without constant diarrea and he said if the chrons is in the large bowel - which is where the inflammation and ulcer things etc showed on last colonoscopy - there will always be diarrea? Is this correct?

Following the discussion with him his nurse took me to a room and gave me bowel prep and talk for the camera and we asked her if he'd had any complaints about how is he...and she stated yes! Then I had my bloods taken and a nurse asked me why I was upset (I was shaking and crying out of anger!) and I said my consultant is very rude and she said his name straight away! Phew...it's not just me then.

I'm going to have this colonoscopy on Friday and see what he says and then go to my Doctors to be referred to another consultant.

So I'm still none the wiser xxx

 

[KellyJellyBelly]

Hello friend,
well I'm 28 and I went around and around with doctors also. I has to find a dr that was compasionate and see him regularly. I see an amazing doctor now here in California. I guess it will take time. I use over the counter anti-diarrhea to help until I was under control, I liked Imodium..may e it willl help.

Sincerely.
Kelly

 

[YJ120]

Thanks Kelly....Looks like that's my next challenge .... to find a compassionate doctor. xx

 

[Nancy Lee]

Aww Yvette I'm so sorry this doctor has you so upset.
You need a much more compassionate doctor to say the least.
Let us know how this scope goes and make sure
you are referred to another GI doctor.

Healing Hugs~Nancy

 

[YJ120]

Thanks so much Nancy xx

 

[tiloah]

well in his words 'if you're not going to the toliet 15 times a day with bloody diahrrea, you don't need to come back' (note - I've never had blood in it!)

My questions to him was why did the camera consultant diagnose chrons straight away and why did none of the many stool samples show any form of infection? His reply was 'I'm the expert, trust me'!!

AUGH. That is such absolute nonsense. When I had my colonoscopy the inflammation in my terminal ileum was "severe" and I was having diarrhea only once a week (when I ate popcorn). I have never really had blood in my stool. Most of the time I didn't have *any* symptoms at all.

Did you have biopsies done with your colonoscopy? Are you doing another one? I would think the results of the colonoscopy combined with biopsies would be enough to be definitive, let alone your symptoms (and your response to Pred).

GRRR. This makes me so mad. I don't understand why we are made to see doctors that clearly don't know what they are talking about.

I hope you get this straightened out soon and they put you on a treatment plan that helps you.

 

[YJ120]

Hi,

Thanks for your post...I'm so frustrated with it all!

Yes I had biopsies and they showed chrons. Having another colonoscopy on Friday, this time done by the arrogant consultant . If negative I want a second opinion and if positive I still want refferring to another consultant.

Thanks for your support xx

 

[ameslouise]

Hi Yvette and welcome.

I don't know how things work over in UK, but I hope you can find a consultant that you are better suited with.

In the meantime, good luck with the test on Friday. I hope you get a good report.

Keep us posted! - Amy

 

[tiloah]

Hi,

Thanks for your post...I'm so frustrated with it all!

Yes I had biopsies and they showed chrons. Having another colonoscopy on Friday, this time done by the arrogant consultant . If negative I want a second opinion and if positive I still want refferring to another consultant.

Thanks for your support xx

It's fascinating to me that he puts more weight into a subjective complaint (diarrhea) over objective data (biopsy). Usually it's the other way around! Ha. I wonder if he goes around diagnosing people who have IBS with IBD just 'cause they have diarrhea?

 

[YJ120]

Arrrrrggggggggggghhhhhhhhhhh

Hey all,

Omg, just to make things worse...the hospital phoned me on Wednesday afternoon.....the Consultant isn't doing outpatients colonsocopys today! So now I'm not in until Saturday 16th!!!! I'm at the end of my tether! On the plus side this is with a different consultant, so I'm going to ask to stay under his care!

I went to my GP on Wednesday and we tried to look for another consultant but nobody had appointments until June!!!!!

I'm going on holiday on 23rd April and I'm scared I'm going to be ill for it

Hope you all have a good weekend xx

 

[Astra]

Hiya Yvette

only just found you! I've replied to you in the Employment Law thread

Oh God! There is nothing worse than a doctor who is so far up his own arse he can't see the wood for the trees!
If it was me, I'd bin him! Is he dead old? BTW I've never bled, so he's talking bollocks!
Go back to your GP and ask for a referral to another hospital, the GP has to comply.

http://www.nhs.uk/choiceintheNHS/Yourchoices/hospitalchoice/Pages/Choosingahospital.aspx

Also ask your GP for some Prednisolone, just to tide you over, I get all my scripts from my GP, not gastro.
good luck, we're here to look after you now, you're no longer alone with this!
lotsa luv
Joan xxx

 

[e13 boy]

Hiya Yvette

only just found you! I've replied to you in the Employment Law thread

Oh God! There is nothing worse than a doctor who is so far up his own arse he can't see the wood for the trees!
If it was me, I'd bin him! Is he dead old? BTW I've never bled, so he's talking bollocks!

Joan xxx

You are not wrong Joan!!
In the 2 years leading into my last resection every blood test was anemic.I had 'D',weight loss,gut pain,always tired,painfully white,chronic erythema nodosum all classic CD.Despite my previous history the arrogant consultant got annoyed with me when i kept complaining.
I got another opinion after i went to hospital via A&E - within 12 weeks i was back on the operating table for another resection.
His arrogant words were ringing in my ears when i was cut open - again.

YJ120 - in all the years i suffered i only ever bled twice.This was in the months leading into having right side hemi colectomy.
When i finally got diagnosed i was always asked the same q's at o'patient appts;
How many BM's?
Blood or Mucus?
Weight?

My complaints about being always tired,painfully white,always getting colds,crohnic erythema nodosum always fell on deaf ears.
If i complained about 'D' they just blamed the right side hemi.
I only ever met 2 Dr's who really listened to me;
The 1st one got me diagnosed correctly (10 years late!)
The 2nd one who i underwent the 2nd resection under.

Keep,keep moaning until you find out what is really going on.
If you are not satisfied with the next opinion keep going until you find a Dr who confirms what your problems are.
From my experience some of them don't understand how different CD/UC patients can be.They should read this forum!

I wish you every success in finding out what is wrong & i then hope you get it under control ASAP

Best Wishes

 

[ameslouise]

Oh, Yvette, that sucks to have to wait, but at least it's only another week and not a couple of months! Good luck hanging on until then. I hope the scope goes okay.

- Amy

 

[YJ120]

Joan - hi and thanks for your post. I am binning him - he's such an arrogant so and so! Grr even thinking about his lack of compassion winds me up! lol. He's not dead old, he's just horrid! No people skills whatsoever! I tool my mum with me because she's a nurse and knows all the medical jargon and he did not like that one bit! She asked a question and he put his hand up to her face and said your daughter speaks first!!!!!!! I don't know how I stayed in my chair! I told him about this at my last appt! How rude!

I'm in for a colonoscopy with a different consultant next Saturday, so I'm going to ask if I can stay under his care. If not I've already spoke to my GP and she will refer me. We looked for a referral on Wedsnesday but there were no appointments til June! So I thought I'd best see what happens with the camera first.

I've got some pred left, I just want to get this camera first. I'm taking some on holiday too - I'm not feeling like this when I'm on holiday in 2 weeks!

Thanks so much for your support xx

e-13 boy - thanks for your post. I get asked the same questions - they don't want to know about all my other symptoms! I will keep pushing and pushing until I have answers! I find it ridiculous that 2 people have diagnosed me and he's questioning it! I totally agree - they should read this forum. haha. Thanks.

Amy - thank you for your support xxx

 

[YJ120]

Hi All,

Well I had my colonoscopy on Saturday with a different consultant and he's more than sure it's chrons, he just wants the biopsies back to confirm it! Him and his nurse listened to all my other symptoms and when i told them I don't have constant D they said but you've had that and been treated....not like my last consultant who thinks for some reason to have crohns you must have constant D!

Finally, I feel like I'm getting somewhere

I've also asked to saty under this consultants care and he said it's fine! Phew...breath of relief!

I am going to complain about the other idiot who calls himself a consultant...does anybody know how I go about doing that?

Hope you're all well xxx

 

[tiloah]

Hi All,

Well I had my colonoscopy on Saturday with a different consultant and he's more than sure it's chrons, he just wants the biopsies back to confirm it! Him and his nurse listened to all my other symptoms and when i told them I don't have constant D they said but you've had that and been treated....not like my last consultant who thinks for some reason to have crohns you must have constant D!

Finally, I feel like I'm getting somewhere

I've also asked to saty under this consultants care and he said it's fine! Phew...breath of relief!

I am going to complain about the other idiot who calls himself a consultant...does anybody know how I go about doing that?

Hope you're all well xxx

I'm glad to hear you feel like you're getting somewhere. We really don't need the added stress of dealing with these crazy doctors!

 

[Astra]

Hiya Yvette

That's good news, well done for finding the new doc!

You could complain about the other quack by writing to his manager or the Primary Care Trust.
Or PALS - Patient Advisory Liaison Service
Or P&HSO - Parliamentary and Helath Service Ombudsman
Or just to the doc himself!

good luck
xxx

 

[YJ120]

Hi All,

Sorry it's ages since I've been on here, I've been so upset with it all, I've tried to not think or talk about it! I'm still in limbo - well maybe not after the news I've found out today!

I had the colonoscopy with the new consultant and he said it was more than sure it was crohns, as I updated earlier. I then had an appointment with him and he said he still wasn't sure and the biopsies had come back inconclusive! However there were ulcers in my small bowel, which he said is abnormal, so he wanted me to have a CT scan!! I was so upset, I really thought I was getting somewhere!!

So I had my scan on 16th June, since that I've still been having issues with my eyes - I was at a point were I was so fed up of it all and demanded an appointment went to my GP who referred me straight to the hospital with inflammation of the eye, so now I am under treatment with the eye ward too (after beign told by 2 doctors and 2 consultants that my eyes were not in relation to this!! Furious!!). I was at the doctors yesterday for a vaccination *** and asked the nurse to check my records to see if the scan results were back, as I haven't heard anything of my new consultant. She said they were and I had a nosey, but neither of us could read them! So I managed to get a phone consultation with a Doctor who's been excellent with me all the way through today and the scan has shown that the opinion is that I have terminal ileum crohns disease and 8 inches of my small bowel is affected. Now I'm just waiting for the consultant to sort an appointment and hopefully finally get me on medication!

Bless the helpful doctor, she said I bet you feel like sending a copy of this to the horrid consultant and has printed me a copy off! As soon as it's all sorted with the new consultant a huge letter of complaint is going in, including my absence record and how much money I've lost, because of incompetence! grrrrr!!

Finally, and fingers crossed, I'm getting somewhere

Thanks again for all your support xxxx

 

[Trysha]

hello YJ
Good to hear you are now getting somewhere.
Please keep in touch and let us know how things work out for you.
Hope you will soon be feeling better
Trysha

 

[tiloah]

Oh glad to hear you're getting somewhere. I don't really understand why you would have to be put through the lovely experience of a CT scan if they already know your small bowel is ulcerated. I guess just to see how much is affected? Strange.

In any case, hope you get some treatment and it does a good job for you.

Also that is ridiculous about the eye inflammation. It is well known that an extra-intestinal symptom of Crohn's is inflammation of the eyes!

 

[xJillx]

I am glad you are getting to the bottom of all of this. Hopefully, you will start treatment and begin to feel better soon!

 

[YJ120]

Thanks again all

Thanks for the info and inflammation of eyes too, think I'll print that off and take it with me, seen as they have fobbed me off with it.

It's great to have your support xx

 

[Astra]

Hiya Yvette
good to see you again!
Good luck with your appt, and hopefully a new med regime will soon have you back on the road to health.
xxx

 

[YJ120]

I am finally diagnosed with crohns disease...what a journey it has been getting here!

Been prescribed Budesonide for 3 months - to help with the inflammation and Mesalazine for long term. Doc told me that the Mesalazine (pentasa) only works on 7-10 people. Got another appointment in 6 weeks.

Finally getting sorted I feel like a huge weight has been lifted off my shoulders!

Thanks again all xx

 

[David]

I'm glad you got a diagnosis and wish you all the best going forward

 

[YJ120]

Thank you

 

[tiloah]

Sorry to hear you have Crohn's, but glad to hear you have a diagnosis. Now they better get you on some treatment that does the trick! Hope you feel better.

 

[YJ120]

Thank you