Getting so frustrated.. any advice be super

[Danceruk]

Sorry guys .. getting so frustrated with my gp.. I better start from the beggining lol

Was diagnosed a long while ago, it took over 3 years to diagnose.. I had precocious puberty as a kid so was under the care of the childrens hospital, they assumed it was something gyno related(hormone treatment from the age of 2), so I had many tests etc..finally sent me to gastro.

I had terrible trouble at university, had to drop out. Finally found diet that worked for me..remission for years.. 3 years with no flares

Now I have been back studying 2 years, super stressful time atm..bam flare.

1st week went to GP gave me just predfoam

At this point 12-15bm, blood, mucus etc

2nd week went back- unable to drink water, eat...still bleeding
Gave me pred 40mg and predfoam twice a day

He said to come back if it wasnt improving, now he is on holiday!!

3rd week - Tonight been to see his partner
Weighed me - down 10lb since 1st week
Checked temperature, slight fever

Sending me for blood tests & given me antispasmodic to take alongside painkillers

Blood reducing, but still in really bad pain - been at my desk crying at work today.. just cant get comfy. Constantly having to drink at work as its so hot..making me in agony basically.

He just said cocodomal it up and go for these tests- basically I have to have at least 3 flares before they will refer me to gastro here.

Just feel a bit frustrated, come in and had a good cry... was hoping he might prescribe me some sort of meal replacement, and something stronger for pain relief...

Any advice or words of wisdom would be appriciated so much...apologies for such a longgg post

Thank you in advance:grumpy:

xx

 

[Crohn's 35]

Hey you, I Know you are frustrated and you have every reason...3 flares before seeing a Gastro??? What the heck is that? You tell them you have IBD and you need to see a gastro before something really bad can happen? It is called preventative treatment! Not wait til you end up in ER or burst something. I am not in the UK but someone can help you with the stronger meds, dunno what you guys have there. Also there is ensure or boost, buy some on your own. Give your bowels a rest, that helps too.

It is summertime everyone has doctors on holidays, they need holidays too but all of them at once? Our clinic (with like 10 or more doctors) close for 2 weeks, don't like it...go to emerg and sit for a minimum of 6hours.

Hope you can get help soon! Keep us posted! Hugs!

 

[Rebecca85]

Do you have a gastro's number from when you were diagnosed or treated before? Could you bypass your GP and get in touch with gastro yourself? What about going to a walk in centre, see if they can get you a referral. If all else fails, go to A and E!

 

[Danceruk]

The gastro that diagnosed me is back in Surrey..I paid to see him first time round.

I went to the walk in, referred me to GP the second time as they were telling me "no appointments available"

.. Got to get this anti-spasmodic

erm its called Spasmonal

Anyone used this before with co-codomal??

Thanks guys, I am lucky my fiance is super supportive and knows loads about crohns as his ex wife has it too! Sitting tight with cocodomal and a lolly!

 

[beth]

Your GP has failed to refer you, and you are unable to eat and in pain... sounds like you either go back to your GP practise and kick up a fuss. Or, much quicker, go to A&E.

Good luck!

 

[Silvermoon]

I can't find anything that says you can't use the two together...but I would be careful with the co codromal once taking the spasmanol as it may start to cause constipation (just thinking that if the spasms start to slow down, and your bowel isn't working as much, things might slow down...lol).

I agree with the others... seeing as how the family practice won't help...go to A&E.... keep talking until someone listens....

I hope you find some relief soon. Hugs!

 

[Danceruk]

Thanks guys for all your kind words

Gonna have a pred and get into bed, oh can take me in morning if needs be

Work giving me so much hassle, asked to go early tonight, was given 5 minutes- despite crying at my desk half the day. Gonna have to take tommorow unpaid and get this sorted

Thanks again xxx

 

[Jerman]

I am really sorry that you are going through such a lousy time. I hope that the med changes assist with managing your comfort level quick. I never really had relief from my pain through the use of painkillers, made me a bit loopy though. The only medicine that impacted my pain was an anti-spasm medicine called bentyl.

Additionally, please advocate for yourself and tell your doc his advice or doctrine of you needing to have 3 flares is unacceptable! Insist upon treatment - remember that you are a customer of this or any doc and if unhappy with services, raise some hell. It may help to write out your signs, symptoms, and level of pain so that Dr. Bighead is forced to respond to your cries for help. If you are able, bring along someone close to you who knows your trials and will also advocate for you. Unfortunately, some docs have a bit of a superiority complex due to the silver spoon they were born with. This doesn't make them any smarter necessarily, just that they were able to take a different path to this point of life.

BTW, it sounds like your boss may be a bit of a tool. It sounds that at the very least that they have little empathy. Having to stay through the day despite being in tears and pain for the duration is just plain mental cruelty and very bad (as you know) for your stress level-which has the hot button to your pain. Good luck and please keep us posted, I hope you have relief soon.

 

[Danceruk]

Thanks so much hun

Still really bad, had 1 day off yesterday, going to be a world of pain when it comes to my sickness review... but managed to come in toda

Went to another gp - he said they could refer to gastro if this continues on for a number of weeks

Given me cocodomal & spasmonal

Keeping the pain under control basically, but still cant eat..trouble drinking etc... when the pain hits it hits.. just double up at my desk

Invested in wipes & nappy rash cream.. least a little more comfy!

Thanks for all the support guys xx

 

[Jennifer]

Wow. I mean at first you said you need to have 3 flares? Flares can last over a year sometimes depending on the person. And this next place wants to wait a few weeks and you're bleeding? WHAT? Where are you from if you don't mind my asking? I'm so sorry. A few weeks is better than a few flares but still, its just unheard of. I hope you get speedy service with the gastro when you get to see them. Sometimes a heating pad helps with the pain in your belly and you may be able to use one at work for now. I hope you feel better soon.

 

[Sandstone]

Hi, I'm a new member here too although had Crohn's for a long time. If you have to continue seeing your GP I think you have to insist on an immediate referral to specialist hospital consultant and not let him mess you around. Ask for a prescription for Tramadol and ensure or ensure + it works for me. To use the trite statement "it is the National Health Service not the National Sick Service". The quickest way to get a referral to a consultant is to go to A&E, they then have to provide you with an outpatient referral. Personally I'd do that. Good luck