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NHS Frustration

Hi all,

I'm posting this whilst in hospital. I was first diagnosed with oral facial crohns when I was 12 years old. However some 24years later I was found to have developed a stricture in my illeocecal valve in July 2011.

Since July 2011 I have had an uphill battle. I was a nurse in the NHS but got no support so left. I was placed on steroids which made me diabetic, and move moved to imuran. Unfortunately imuran caused me to suffer from neutropenia. Finally after much fighting I was placed on infliximab.

In September 2012 I had another colonoscopy as my pain, Big D, and lethargy were getting worse. When I went to see my consultant he was dismissive. He said it can't be my crohns as I'm showing no inflammation. He said there was only mild inflammation at most. He said its was just ibs and visceral hypersensitivity.

I decided to change hospitals. The new one was great. I have had a ct enterography and am waiting for a bile salt test before considering surgery. However things have gotten quite bad. About a month ago I was neutropeanic again and then two weeks ago was admitted into my old hospital with more abdo pain.

Now this where I'm stuck and need advice and or ideas. I've been in hospital two weeks. Initially they wanted me under my old dr but I declined. I supplied them with oxfords details and and have copies of there diagnosis. However they are not interested. I had a another normal ct scan which has shown anything. Have seen my notes they are going to stop the infliximab and send me home with no treatment. I don't know what to do. The pain and lethargy are still present although big D has settled mostly due to constipation.

I can't really take any more time off work. Don't really know what to do and my depression is getting worse. I don't feel suicidal but I don't feel believed and not too sure what's point.

Thanks for reading. Hope this makes sense.
 

afidz

Super Moderator
Hello! Welcome to the forum
I am sorry to read what you are going through. I live in the US, but I am assuming that NHS is the health care system in the UK? I am going to tag Angrybird and Astra as they both live in the UK. I am sorry I can't be of more help, but I hope that you get proper treatment and things begin to look up for you soon :hug:
 
Hi thanks,

Today I'm still in pain, and have been feeling sick, but the ct scan done in swindon is apparently within normal tolerances and yet the ct enterography at Oxford showed some lesions. I feel the drs don't believe me.

Mark
 

afidz

Super Moderator
CT scans can be inaccurate or provide false results if the patient moves while being scanned. I am not saying thats what happened in you case, just saying in general, could be a possibility. I wouldn't leave the hospital with out being on meds though, it scares me to think that a doctor would discharge you like that. BUT I don't know the UK health care systme and how it works so its hard for me to understand exactly whats going on
 
Hi there!

We did have a lot of problems with our local hospital and chose to go to Oxford. Where do you live?

You could try calling Oxford main switchboard and asking for Gastro on call. They will normally put you straight through and could ask advice from the on call Doctor? They are all really helpful and maybe could talk to your local hospital for you?

Oxford are liaising with our local hospital, so that my daughter can go there for treatment if it is something that can done quickly, but under Oxford's guidance.

Good luck! I hope you get hold of someone to help, I know how frustrating and worrying it can be. Keep us updated.

(((hugs))) :ghug:
 
Hi. Unfortunately doctors often seem to go only on objective test results rather than severity of symptoms. I've also found that they don't respect patients' opinions very much if they don't match their own. This is a generalisation of course, but I have encountered it in a surprisingly high number of doctors. It must be really hard for you being a nurse and knowing more about illness than the average person. I would have thought that would make doctors take you more seriously, but I guess they are seeing you only as a patient and not as a nurse.

If you're discharged from this hospital could you go to another one? Does your GP have copies of your hospital records that you could get them to send to you or your current doctors?

Are you getting any help with pain management? That might also be something a GP could do. Mine will often help me with symptom management even though treating the disease itself is left up to the consultants.

I spent a lot of time seeing one doctor after another until I found ones I was happy with. It does take a while but sometimes it's the only way to get effective treatment if the first ones you see don't give you the treatment you need.
 
Hello there, I'm really sorry you're having such a difficult time, you sound like you could do with having a good scream to relieve some of the frustration I sense. (That might get their attention :lol:) I wondered if it would be possible to request a second opinion, of your current situation, from the new Dr you like from Oxford, I know Oxford have already assessed you previously so I don't know if it is something they can do.

I just wish I could come up with a better response for you.

By the way, welcome to the forum, I'm glad you found us, sorry I can't help much but you should find some help here, take care and keep in touch. :ghug:
 

Angrybird

Moderator
Location
Hertfordshire
Hello and welcome to the forum.

It sounds to me that perhaps you need to get in contact with PALS, I think it is very irresponsible for the current team not to be liaising with the folks at Oxford who are actually the ones now in charge or your crohn's management and to send you home without any indication of what your treatment is going to be. They also need to do more testing - perhaps another scope to confirm exactly what is going on inside. I am also wondering whether any checks have been done on your vitamin levels?

AB
xx
 
You're not the only one who's struggled with the NHS, I concur that you should be getting a second opinion, if you have already been discharged I would recommend contacting your new gastro doctors secretary and informing them of the situation. Some docs/hospitals/departments are great for not passing on your information.

Your new doc will be able to asses what's happened from there and help.
 
We read so much on here about patients not being taken seriously, fortunately for me thats never happened but for others.....
Yiu just know if the Dr was on the receiving end of the pain & diarrhea & bloating & cramping they'd definitely take it seriously.:ymad:

ItsMeHeretoo, don't be fobbed off. Let them know you'll be seeking a 2nd opinion. You know your own body better than anyone including your Specialist.
Rgds
Grant
 
Hi folks,

Thanks for the support.

I'm still in hospital and just learnt that my consultant is not in today so won't being doing a ward round till Thursday. In addition they are trying to get my scan review by the surgeons and then I can be sent home. However this would be with no active treatment just pain relief and questran which they still haven't test for bile salts.

I'm thinking the best option is to discharge myself and update oxford ASAP.
 
I third that! You have every right to contact Oxford and get them on your case, wishing you the best. Keep in touch.
 

scottsma

Well-known member
Location
Tynemouth,
Perhaps I've missed this in the above posts,but do you have an IBD nurse ? I can contact mine by phone anytime I need to (which,luckily I don't at this time).I can't imagine a hospital that wouldn't have one.They are brilliant for advise and as a go-between.I hope you get sorted soon.You'll always get lots of support on the forum,but sometimes it's not enough when you need practical help.Best Wishes.
 
Hi, just a quick update. Oxford had not heard from swindon. I've insisted I see someone today to explain why they did not get a copy of the ct enterography from Oxford. In addition I am requesting they discharge me as I have no confidence in them and will make contact oxford and explain the situation and that they have not replaced the infliximab with anything else.

All in all very disappointing. Hopefully things won't get worse whilst I wait for oxford to bring my appt forward.
 

scottsma

Well-known member
Location
Tynemouth,
You really do not need all this aggravation when you're poorly.Everyone knows that stress is BAD for IBD.I hope you get sorted soon.
 
Hi, just a quick update. Oxford had not heard from swindon. I've insisted I see someone today to explain why they did not get a copy of the ct enterography from Oxford. In addition I am requesting they discharge me as I have no confidence in them and will make contact oxford and explain the situation and that they have not replaced the infliximab with anything else.

All in all very disappointing. Hopefully things won't get worse whilst I wait for oxford to bring my appt forward.
Pleased that you've raised your concerns, they should be doing more for you. I hope that you get the care you deserve quickly.
Best Wishes
Grant
 
Wow that was a good guess. Your right. I'm shocked I always thought these sorts of problems were rare. It's certainly been an education if nothing else.
 
Location
Australia
Hi itsmeheretoo.
I've had neutropenia for about a decade now - I'm surprised more CD patients on immune suppressors don't have it.
I have found that since my dose of GCSF was increased - my fatigue had evaporated.
Is your neutropenia monitored closely?
It has taken years to get mine under control and to get the dose of Humira and GCSF balanced effectively.
Hope things work out for you.
 
Well I'm home. Pushed them to discharge me as they would not talk to oxford and get a copy of the scan results.

They wanted me to see the pain team rather than actually treat my crohns. What was worse is the dr made a fraudulent statement in my notes stating that my family's had apologised for the rudeness. I have never once been aggressive. All I did was ask the ward manager to find out what was happening. My family have confirmed they said no such thing.

I feel abandoned now. I will add to the complaint but after nearly 20 days I hospital I'm shattered. I've manage to contact oxford myself who confirm they had not heard from them and am now waiting a sooner slot.

Never thought this would happen to me. Not being believed and with no end. I know theres people far worse off from me so perhaps I'm being a wimp.
 
Well I'm home. Pushed them to discharge me as they would not talk to oxford and get a copy of the scan results.

They wanted me to see the pain team rather than actually treat my crohns. What was worse is the dr made a fraudulent statement in my notes stating that my family's had apologised for the rudeness. I have never once been aggressive. All I did was ask the ward manager to find out what was happening. My family have confirmed they said no such thing.

I feel abandoned now. I will add to the complaint but after nearly 20 days I hospital I'm shattered. I've manage to contact oxford myself who confirm they had not heard from them and am now waiting a sooner slot.

Never thought this would happen to me. Not being believed and with no end. I know theres people far worse off from me so perhaps I'm being a wimp.
No you're not being a wimp, its their attitude thats making you feel like that & its not fair on you.
I hope you hear from Oxford soon & get better quickly.
Grant
 
If Swindon are basing everything on ct scan, make Oxford get a copy. Dr S said there was nothing on my daughters scan. Oxford found several things including a tethered bowel!!!
 
A wimp you most definitely are not!! You did absolutely the right thing, I'm glad you are now out of that situation (in the hospital). You have up to 6 months to put in a complaint so take a bit of time to get used to being home again. Make a few notes of what happened just as a record and when your'e ready then put in the complaint below is a link to how to go about doing it.

http://www.gwh.nhs.uk/media/107264/how_to_make_a_complaint.pdf

I'm wishing you a speedy appointment at Oxford, hope you get it soon, take care for now and take it easy. :ghug:
 
i can feel what you are going through! i have no faith in the nhs scotland either, i dont have a diagnoses yet but know i am in pain and they dont care, i am complaining to the health minister because the care is a shambles, threaten to formally complain. they will listen then! i was meant to be reffered to a gi 6 weeks ago and they only dd it last week and lied about calling the gi's secretary for a urgent appointment, so it seems it goes on all over the uk!
i hope you keep fighting your corner and dont be put off by them. take care xx
 
I had similar problems when I first needed surgery, I was told I was being referred to one of the UK's leading GI's for the final decision. Took them months to sort out the referral by which time I'd already taken a myriad of test results down to A&E at the Queen Elizabeth.

The on call medic there did more for me in five minutes than three consultants and my GP surgery put together in 8 months.

I've now been treated by two of their best colorectal surgeons and their senior most surgical registra, who knew more about Crohns than the GI my GP kept sending me to.

I'm currently under the care of Dr. Jason Goh who has been fantastic and arranged for me to have proper care under his team at the Queen Elizabeth.

Some times it's worth just attempting to refer your self.
 
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