No diagnosis yet, desperately need help

[RandomPerson]

Hi, I just registered here. I'm 26, female, from the UK. I don't usually do online forums so I'm not sure exactly how things work on them, but I'd be really, really grateful if anyone can give me any advice.

I first saw a GP in January this year having already had symptoms since the previous summer. Since then whatever illness I have has got much worse. My GP seems to think Crohn's is the most likely diagnosis but I haven't actually been diagnosed with anything.

I'm seeing a hospital consultant who hardly ever seems to be available, and after a quick online search he seems to be doing a lot of private work at the expense of his NHS patients. I've asked the GP if I could transfer to a different hospital but she didn't think I'd get an appointment any sooner than my current consultant is offering, which isn't until November, as he's already decided that I'm a 'low clinical priority'.

A few months ago before I'd actually got an appointment with this guy, I went to A&E at the same hospital in the early hours of the morning because the pain was unbearable, and I was getting a lot of blood loss and losing stuff that looked like sheets of tissue, but I have no idea what that was. The dr at A&E did blood tests and was very concerned about the ESR and CRP levels, he said they were very very high. He spoke to gastroenterology (the department I'm under) and was very apologetic, but told me that they said despite the blood tests, they won't admit me or even give any pain relief until I have a diagnosis. He obviously felt really bad sending me home in such a state but there was nothing he could do with the other department not cooperating.

Since then I've had a colonoscopy which the hospital dr says is clear and an MRI that he also says is clear, but I know for a fact he's lied in the past about blood results that the A&E dr said were concerning, saying they were normal, and last time I saw a locum GP on an emergency appointment he said the colonoscopy showed inflammation, so I don't even know who to believe. He's also made a lot of errors in letters to my GP. I think he's trying to fob me off because I'm not as valuable as a private patient. There's no way I could afford to pay for private treatment either. I'm waiting at the moment for the results of yet another blood test and a calprotectin test. He's telling me though that he won't see me again until November!

I just don't know what to do. A&E obviously can't help, they did their best and were really good but were limited by the other department. I have no pain relief that works at all. I'm scared to eat so I'm always hungry and my guts are in agony anyway, and I'm losing a lot of blood and this tissue stuff. I can't even sleep through the night, ever.

Does anyone know of any way to relieve this that doesn't involve prescription meds? And has anyone had a similar experience with a dr, and do you know what to do about it?

Thank you so much if you actually made it to the end of all that! I'm just at my wit's end, I'm so confused and scared by what's happening and the fact that the dr just refuses to help me.

 

[afidz]

I can't be of much help with NHS because I live in the US, but the doctor sounds like jag off. I would talk to your GP again about referring you to someone else, even if it doesn't get you in quicker, it seems like you would have better luck going that route.
As far the pain relief, a lot of people find comfort in heat (hot showers/baths, a heating pad). You can also talk to your GP about doing a liquid diet for a few days to give your bowels a rest, that might reduce inflammation and lessen your pain and symptoms. If you don't want to do a liquid diet, you could do the BRAT diet which is bananas rice applesauce and toast and see if that helps at all.
I hope you find the answers you need soon, it sounds really frustrating

 

[RandomPerson]

Thank you, I'll definitely try the heating pads and liquid diet! Good to know that there's something I can actually get hold of for it, haha. I think you're right about the dr change too, it's probably not worth sticking with someone like this. I don't know if it would be worth finding out the recent test results before trying to change though, just so I've got something else to tell any new dr? It's nice to have some actual suggestions of stuff to do, it's made me feel a bit more optimistic so thanks for that as well.

 

[afidz]

I would have the new dr request the results, I don't know how it works in the UK, but thats how we would do it here

 

[RandomPerson]

Thanks, I'll ask the GP about doing that.

 

[Ronald]

Wow, that is shocking. I can't believe you went to A&E with severe pain, passing blood AND what you thought to be tissue with a very high ESR and CRP and they didn't admit you...it's like you almost need to be dying to get a diagnosis.

I can relate somewhat (but nowhere near) because my doctor said I had a high CRP and could give me medication, but wouldn't because he wanted me to see my consultant in the state that I was (and still am) in. IBD diagnosis is appalling in the UK...

I was referred in May and saw my GI for the first time last week.

 

[RandomPerson]

I agree it is appalling, I know so many other people too who struggled to get GI type stuff diagnosed. It's almost like you have to fight for it. That's a major flaw of the system I think, that they can't give you the medication before you see a consultant but then you have to wait ages to see them. Hope your appointment went well now you've had one though!

 

[josie211]

Hi I'm 14 and have had crohns disease for 2 years now. My gastroentoligist suggested that I tried the modulen milk diet to give my gut a rest but at the time I was about to go on holiday so I opted for steroids. I still drink the modulen milk now just to help with nutrition, there are lots of flavours: strawberry, banana, lemon and lime, chocolate, coffee etc. I also find heat pads or wheat bags are helpful if I have bad stomach ache. Hope this helps.

 

[RandomPerson]

Just Googled it and the modulen milk looks like a good idea, thanks. Heat pads do seem to help as well. Hope you're doing ok too.

Kind of got an update as well, apparently the calprotectin results are back. I don't know what they are yet but my appointment might be getting moved forward to September, so I'm guessing something might have come up.

 

[Danblue]

Hi there, my suggestion to you is next time you are in extreme pain and having bad symptoms go to a n explore demand pain relief make out its worse than it is if you have to have them do blood test for inflammation levels barium tests ct / mri if possible make sure you tell them every symptom and how long you have had it the quicker this condition is diagnosed and dealt with the better your recovery and less chance of future complications. I was phobbed off with ibs diagnosis for 6 months until a month ago when it got to a point were they were forced to do all the above as I couldn't stand up straight due to pain or move it was not pleasant at all and now I am in hospital awaiting surgery on Friday to repair fistulas caused by inflammation and bowel removal for same reason, not trying to scare you just don't want someone else having more complications than necessary due to doctors late diagnosis and doctors not doing in my opinion all they can as I believe I might not be in this position had they taken me more seriously towards the begginging of the year. Good luck and make sure you keep eating and drinking, worst thing is to not eat and drink properly.

 

[Danblue]

A n e ###

 

[josie211]

Thanks I'm doing fine.