Advice needed - stuck on waiting lists for scope in the UK

[Carla1985]

Hi all,

I am currently waiting for an appointment for an endoscopy to confirm my diagnosis of crohns. I have spent the last year in agony most days with stomach pains and such as well as abscesses on my behind so as I'm sure you can imagine I am at my wits end. I keep having appointments through for this endoscopy but then have the hospital cancel them at last minute and have to wait 1-2 months for a new one to come through. Whilst waiting for this they refuse to give me anything to help with it as it isn't confirmed (even though every Dr I see agrees that's what it is).

My main worry is that being left untreated gor so long it could be causing damage of some kind, as I haven't really has anyone explain how it works etc. is this a possibility? Also is there anything I can do to help ease things until the app comes through? I'm not sure how much longer I can live like this every day. My main issues are crippling stomach pains and what feels like my bottom being swollen leaving me in pain to both sit and stand.

Thanks
Carla x

 

[Jennifer]

Hi and welcome to the forum!

I'm not quite sure how you can speed things up in the UK. Often times in the US we tell people to go to the hospital if things are really bad. Sometimes scopes can be pushed sooner if it's urgent (again I'm not sure if that can be done in the UK). I'll tag some of our UK members and see if they might be able to share more information. valleysangel92, Astra, Grumbletum could you or do you know someone else on the forum who might be able to help them figure out how to get a scope done sooner in the UK?

As for the abscess, you may get more answers in the Fistulas, Fissures and Abscesses section here: http://www.crohnsforum.com/forumdisplay.php?f=76

In regards to abdominal pain, have you altered your diet at all? What sort of things are you able to tolerate? For IBD going on a low residue diet or even a liquid diet (there are supplement drinks out there or you can make your own soups and drink the broth) can help to reduce symptoms.

Hope you can get the scope done soon! Keep us posted on how you're doing.

 

[24601]

I'd recommend speaking to your GP about these delays. They may be able to speed up the appointment - and insist that it not be delayed again. That's entirely unreasonable to keep cancelling and making you wait!

Have you seen a gastroenterologist? Because if you are under the care of a consultant I'd phone their secretary (just ask the hospital switchboard to put you through) and explain about the delays. I would hope that they would help you get an appointment sooner or another appointment with the consultant to discuss your continuing symptoms. They may not but it's worth a try!

If you're in severe pain, going to A&E is certainly a reasonable thing to do. They may be able to help with the pain or provide some other temporary relief and should also assess you to see if you need more urgent care. If they think you need to be admitted then you would get access to further testing with a shorter wait. Vomiting and diarrhea leading to dehydration, passing excessive amounts of blood and fever along with severe pain are amongst some of the other symptoms that would prompt a visit to A&E - but tbh if you are at your wits end and getting no help then that seems reason enough.

Good luck! Let us know how you go!

 

[UnXmas]

Your doctors won't be able to start many treatments without a diagnosis or at least detailed information from the endoscopy. They should be able to provide some help with symptom management though, e.g. painkillers. I'm guessing that if you've already seen a gastroenterologist, you won't have another appointment with them until after the scope is done, but your GP should be able to prescribe something.

Are you waiting for a colonoscopy as well or just an upper endoscopy? Have you had any other tests, or have you had any abnormal blood test results?

Your GP can request a more urgent endoscopy appointment if there have been changes in your condition which warrant it, e.g. blood tests becoming more abnormal, or new symptoms developing or existing symptoms deteriorating.

 

[24601]

If you need help advocating for you about the delays or want to make a complaint then you can contact Patient Advice and Liaison Services (PALS).

And if you feel you need urgent help over this weekend, for example, but don't feel it warrants a trip to A&E you should be able to get help from your GP's out of hours service. I've often found this really helpful for quick treatment for things that I know aren't A&E-worthy but I've also had them tell me to go to A&E too because they feel its necessary. Either way it can be very helpful and reassuring.

 

[Grumbletum]

I would agree with all the sound advice above. The diagnosis waiting game can be very frustrating and worrying which of course can aggravate symptoms. I had a small bowel follow through to confirm if I had Crohn's or not, waited a few weeks after that then got a letter with an appointment to see a consultant six weeks after that. My symptoms were escalating so I called my GP. She had access to my test results and prescribed Prednisolone until I could see the gastro doc. You say you have seen several doctors so maybe on the strength of that they could prescribe something for you.
Like Jennifer says, it can really help to look into things like diet to help ease the symptoms. It's always worth a try. This forum was a Godsend for me during the waiting period and just the feeling that I was doing something proactive helped.

 

[valleysangel92]

Hello, sorry I'm late responding,

Unfortunately waiting times vary from hospital to hospital, some places its a few weeks and some its a few months. The best way to have a scope faster is to have it done as an emergency as an inpatient but this still isnt a garuntee. Its not uncommon for hospitals to get the symptoms controlled and then send you home to wait for further testing.

In my area 1- 2 months is about the wait for an urgent scope, which is one down from emergency. Last year I spent 2 weeks in hospital in July and didnt get my scope until November and that was down as an urgent request.

If you've been seen by a GI then you could see if there is an IBD helpline in your area which you could call and ask for advice.

The problem they have is that if they start treating you before completing tests then they could affect the results. If they treat you with steroids for example, they could significantly change the appearance of the inflammation and make it harder to distinguish the cause. The other problem is that there is the possibility of a completely different problem with a whole other range of treatments. The medications used for IBD are powerful and shouldnt be given without sound grounds.

I know its difficult being left without a diagnosis. I was undiagnosed for nearly 5 years, but your on the right track.

If you become very unwell then go to A+E and let them know whats been happening, even if they dont keep you in they might be able to speed things up for you.