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12-14-2017, 02:29 AM   #1
willpwuk
 
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A&E/ER and crohn's

Hi everyone hope you're doing well. I just had to vent, and wanted to ask any of you if you've experienced this as well.

Now that i've finally got my diagnosis i thought i'd be taken seriously when i was having a flare. I just moved recently, and was feeling great so i decided not to refer myself to a new GI straight away (in hindsight i'm an idiot. lol.)

Anyway, the flare of flares started. I was unable to eat, in pain, losing a lot of weight, and overflow diarrhoea. I have another stricture....Anyway. Went to my gp who suspected i had a partial obstruction, and considering my history called ahead to A&E to get a bed ready for me. Lmao. I actually thought i was being taken seriously at this point....Went to A&E and guess what....'You have to wait to see the triage nurse first, and she'll decide where you go' Lol. Went in to see the triage nurse, and she decided my symptoms didn't warrant being admitted and sent me to the hospital's GP , who decided i wasn't having a flare, and that i was probably having the flu for the last 2 months. They didn't even bother taking any bloods or even an x-ray. Decided to go home before i ended up screaming down everyone in the hospital. Called my GP the next morning, and safe to say she gave the hospital a real bollocking.

Day 2: Went to A&E this time with them expecting me, and this time round, I was seen by one of the A&E drs. explained my symptoms to him, explained the treatment i usually had, and we both agreed i was having a flare. He took some bloods....surprise surprise they were elevated, however they weren't elevated enough for him. I asked for the numbers, and for some reason he wouldn't even give them to me. Instead his 'diagnosis' was that i wasn't having a Crohn's flare. G fugdiojfodijf damn it. I had to deal with 'it's just ibs' for 4 damn years before i was diagnosed. I would have thought that with a diagnosis you'd actually get taken more seriously. lol. I even had a fucking piece of paper that had: DIAGNOSIS: CROHN'S DISEASE from a hospital discharge summary which showed the exact same symptoms as i was experiencing that day.

He kept going on about 'His medical opinion, he's the doctor' oh and the best part just because i know my symptoms and i know some of the better medical terminology to explain them i should 'Stop reading on google.' and that i was 'wasting valuable resources for sicker patients.'

Went home again after being given IV paracetamol and a quarter of a bag of fluids.

Decided to call the local GI secretary and after explaining everything to her she instantly put me through to the IBD nurse who after a 5 minute chat with the gastro and a quick chat with my GP prescribed me pred, and humira.

I know A&E/E.R are good when it comes to treating acute emergencies but they really faulter when it comes to chronic conditions. It's incredibly frustrating. At least i know my lesson now. If i have to go back in. I have to call the IBD nurse first. I'm probably gonna have to because this partial obstruction isn't getting any better, and i don't think i can wait 2 weeks for meds to start working. Nervous about going in again because even though the IBD nurse said that they'd have my back if i have to go in, that i'm going to get treated like that again.

Sorry this is so long everyone but i just needed to vent. I really thought finally being diagnosed and IBS being completely ruled out would mean i'd be taken much more seriously.

Has this happened to anyone else? If so....what route do you usually take, do you go through your GI?
12-14-2017, 09:56 AM   #2
Lisa
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Sorry to hear you have had troubles - I agree that ER/A&E is better equipped to handle emergencies vs. chronic conditions.

In the past, when I have flared badly enough to warrant a hospital stay, I would go to my GI first, and he would arrange for a DIRECT ADMIT to the hospital from his office...do not stop at the ER, head directly to admitting.....not sure if that is an option for you.....
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While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
12-14-2017, 10:53 AM   #3
scottsma
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Sorry you've had such a bad time,we really can do without all of that when we're sick.
But now you're in the hands of a GI / IBD nurse things should be better from now on.
Let that be a lesson to us all.Just 'cos you're feeling ok,don't faff about enlisting with new docs etc. if you move house. I hope you feel better soon.
12-14-2017, 11:00 AM   #4
Scipio
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If your Crohn's is out of control, you may wish to consult with Dr. Ailsa Hart at St. Mark's in London. She is an IBD specialist.
12-14-2017, 10:37 PM   #5
Jabee
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Thatís definitely happened to me. A year ago I went to the ER because I was in serious pain. They did the usual CT scan and said it was fine, maybe constipation. A week later, after feeling ill the whole time, I read the report online and discovered that the CT had been misread and that I had a stricture with a partial obstruction at the terminal ileum. By that time Iíd been doing the clear liquid diet and the obstruction had cleared a bit. Itís just ridiculous when they screw things up. Hope you feel better soon.
12-24-2017, 08:05 AM   #6
lilpiggy
 
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Hey, I feel your pain ! so to speak. Exact same/sorta thing happened to me. Couldnt get through to IBD nurses as off until 8th January !

Already had a doctors appt for that day anyway for something else, upon seeing how much pain I was in & how tender I felt GP referred me as an emergency to surgical assessment unit as I had ongoing severe cramping in lower bowel & fever (no diarrheah & no blood), stayed overnight at hospital.

Bloods taken CRP reading 103.

Diagnosis, crohns flare up, iliac fossa pain.

Discharged with no meds, just told to continue my mesalasine as normal.

Thankfully the cramping has slightly reduced, it was unbearable for 3 days and same thing a month ago that lasted 2 weeks, but as no other signs other than cramping thought it was a bug (I was told by IBD nurse 2 years ago that my cramping in lower bowel area is nothing to do with IBD and to go back to docs, and guess what.. its been pointless).

So.. unable to speak to anyone at IBD until 8th January, that is RIDICULOUS. Im scared stiff to eat or drink anything right now in case these cramps come back with a vengeance.
12-24-2017, 09:08 AM   #7
Jabee
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lilpiggy, Iím currently not doing too well and in a lot of pain so itís a liquid diet for me (while I cook and bake for the holidays). My GI semi-retired and moved his practice, and the new GI (to whom he referred me) canít see me until next July! I actually laughed when I heard that. Her assistant told me I should call the on-call GI with any problems. In essence the new GI is treating me like a new rather than an established patient. Right now Iím approaching even clear liquids with some fear. And you have to wait two weeks even though you were recently hospitalized? Good grief.
12-24-2017, 09:30 AM   #8
ronroush7
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Hey, I feel your pain ! so to speak. Exact same/sorta thing happened to me. Couldnt get through to IBD nurses as off until 8th January !

Already had a doctors appt for that day anyway for something else, upon seeing how much pain I was in & how tender I felt GP referred me as an emergency to surgical assessment unit as I had ongoing severe cramping in lower bowel & fever (no diarrheah & no blood), stayed overnight at hospital.

Bloods taken CRP reading 103.

Diagnosis, crohns flare up, iliac fossa pain.

Discharged with no meds, just told to continue my mesalasine as normal.

Thankfully the cramping has slightly reduced, it was unbearable for 3 days and same thing a month ago that lasted 2 weeks, but as no other signs other than cramping thought it was a bug (I was told by IBD nurse 2 years ago that my cramping in lower bowel area is nothing to do with IBD and to go back to docs, and guess what.. its been pointless).

So.. unable to speak to anyone at IBD until 8th January, that is RIDICULOUS. Im scared stiff to eat or drink anything right now in case these cramps come back with a vengeance.
I am sorry you can't see anyone before then.
12-24-2017, 09:55 AM   #9
lilpiggy
 
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Thanks ronroush7.. I know..

Jabee, thats terrible for you, feeling so poorly and a liquid diet. Why is the new GI unable to see you until next July ? It does sound like they are treating you as a new patient for sure.
That seems like that may be my problem I think, no.one seems to have my notes from the last 8 years whilst Ive been under a consultant, even though this new county Im living was supposed to get them a year ago.

Yup, nearly 2 weeks to wait.

Every big flare up Ive had in all these years Ive always been given predisonone. I asked the unit doctor why he wasnt giving me any and he said he doesnt see they are the answer to everything.
I always thought you had to get something that would reduce the immediate inflammation, I must be misinformed by my previous GI then.
Yesterday, 11:55 AM   #10
willpwuk
 
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Hi everyone sorry i haven't been able to reply but it's been an awful couple of months. A day after i posted this i was rushed to hospital with a complete bowel obstruction, had surgery, and a resection done. Ended up spending three weeks in hospital. Lil Piggy sorry to hear everything you've been going through, i hope you're better now. After my release i ended up with a chest infection, and was started on very strong antibiotics, long story short. No longer than three weeks after my surgery, i was flaring again. FML. I've had to accept it but anyway i was meant to be starting on humira next week but because of the flu pandemic in the UK my GI is slightly reluctant to start me because it puts me even more at risk fml

Thanks for the advice from everyone btw! I've now got my IBD nurse on speed dial and it is one of the greatest things i can ask for. If i need to be seen by my GI she'll fit me in same day, she gives me brilliant advice etc etc. After all the bullshit i went through when i was told i had IBS and was constantly fobbed off by everyone it's such a relief to have that kind of support available.

I know it's Late but happy new year to everyone as well!
Yesterday, 05:54 PM   #11
shamrock15
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I have heard the UK version of national health care was getting a little rocky. We are that was in Canada for chronic issues as well. I think unfortunately it is really going to take us telling a doctor on site to get someone from GI to go over the info. I think most hospital ER's these days are under a lot of strain not to fill a bed unless they have to. This would mean that unless they are going to send you to surgery, they may stabilise you or deem that you aren't at risk of dying if you go home. Off you go to suffer. It may mean waiting a long time at the hospital, but I think we need to start speaking up a little more and basically refuse to leave. This may cause some problems - here in Ontario we have patients actually being kicked out of a doctor's patient queue for trying to advocate for themselves. Will - I hope you can have a lawyer look at this for you. In Canada I would definitely be knocking on some doors for a malpractice suit.
Yesterday, 08:40 PM   #12
Jabee
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Oh my goodness. Iím so sorry you needed surgery! And A&E fobbed you off twice? I hope the doctors who wouldnít admit you knew what happened. Three weeks in hospital is a long time. I hope your recovery isnít slowed too much by the chest cold. My Dad was hospitalized for six months many years ago (heart surgery then a serious infection). When he was discharged he was skin and bones. Hopefully the resection will cause a real improvement in your health. Iím also glad theyíre going to put you in Humira. You definitely need a heavy duty drug to keep your remaining intestines healthy.

Last edited by Jabee; Today at 07:31 AM.
Today, 03:01 AM   #13
CeeCeeGo
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Hi Willpwuk

Just read your story and I am sorry to hear what you have been going through - hopefully you are on the right track now.

Couple of things - your relationship with your IBD nurse is probably the most important one for you going forward. It sounds like this is already developing. Like you I moved and having had a great IBD nurse previously, I made sure that I got to know my new ones quickly. The other person that can be helpful is your consultantís secretary.

It is good that your consultant is thinking of Humira quite quickly after your surgery. The biologics can work well for some people. I found the pens easy to use.

I wish you well 😎
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DX - June 2012 with mild/moderate Crohns. In July 2012 bowel perforated unexpectedly and needed emergency surgery.
Current meds/supplements - Stelara (Nov 2017), Budesonide (when required), B12 injections (every 10 wks), Vit D tabs 800iu x daily, Ferrous Sulphate 200mg every day, Folic Acid once a week
Previous meds - Allergic to Azathioprine, 6MP, Pentasa & Asacol, Methotrexate injections (didn't work). Stopped Humira after 2 years due to ineffectiveness.
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