Waiting for appointment

Hi guys, my names Ally I'm 23 and I'm new to this forum and I apologise for the long post. I don't really have anyone to talk to at home and just need to get my thoughts out.
I recently went to my doctors due to frequent diarreha which has been happening for over 3 months(5-6 times a day), after a blood test and 2 stool tests I have been referred to the hospital and am now waiting for an appointment. Am not really sure what to expect, i was under the impression they would have to do a consultation and book a separate appointment for any procedures. But my family seem to think otherwise. Anyway, since I've been to the doctors my symptoms have got worse. I have lost my apetite and lost 10lbs in January. I feel constantly tired and my brain is not working as it should (i call it brain fog). I also have aches in my lower back, my knees and legs, and occasionally my shoulders and upper arms. This is making everyday tasks harder, some days tying my shoes is so painful. I also have red marks that look kinda like bites on my knees and lower legs, which apparently can be related to IBD. Hopefully my symptoms are fairly normal as i have no idea how long it will take to get a hospital appointment. Right now I'm just anxious, i want a diagnosis and also to know how much damage had been caused to my insides. I know that it will be a long journey to recovery and finding something to make my symptoms better so I'm hoping joining these forums will help me feel less alone.

I am glad that you found this spot but sorry that you may have some form of IBD. I hope that once they get you diagnosed they can quickly find the right mixture of medicines to get you into remission. Feel free to come here to share about your IBD journey or to vent.

Welcome to the forum. I'd be surprised if very much happens at your first hospital appointment - I remember that at mine the nurse felt my abdomen and examined my rear end manually, but basically I had to wait for a colonoscopy (only a shortish wait as cancer was suspected, thankfully ruled out eventually, but usually you seem to wait two months for most procedures on the NHS in my area). It can be a long and frustrating process getting a diagnosis!

Hello and welcome to the forum. I know that you're going through a lot and I can relate myself as I had to go from doctor to doctor more than 3 times for 6 months to rule out that I have Crohn's and yeah although it was bad news but knowing what you have to deal with gives you some kind of relief.

Will you be doing a colonoscopy soon? I hope that everything goes well and smooth.

Thanks for the kind words guys. I think I will probably be getting a colonoscopy soon but not too sure. I know they will have to look at my insides somehow. I am waiting for my first hospital appointment with the specialist so I can discuss my new symptoms and see what he/she thinks.

Hi, with your symptoms it certainly sounds like it could be Crohn's. What usually happens in the uk is you will get an initial appointment with a gastro consultant who specialises in that area. He/she will take a full history again (so make sure you write down symptoms/questions before you go) and then refer you for tests. You may likely have to have further blood tests on the day and most likely will be sent for a colonoscopy +/- MRI scan. A colonoscopy is the most helpful for them as they can see what the bowel looks like and can take biopsies at the same time. I had to wait 6weeks after that appointment for my colonoscopy. Best wishes and hope it goes well.

Plittler said:

Hi, with your symptoms it certainly sounds like it could be Crohn's. What usually happens in the uk is you will get an initial appointment with a gastro consultant who specialises in that area. He/she will take a full history again (so make sure you write down symptoms/questions before you go) and then refer you for tests. You may likely have to have further blood tests on the day and most likely will be sent for a colonoscopy +/- MRI scan. A colonoscopy is the most helpful for them as they can see what the bowel looks like and can take biopsies at the same time. I had to wait 6weeks after that appointment for my colonoscopy. Best wishes and hope it goes well.

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Best to you.

Hi Ally, just thought I'd cheer you up - I've had Crohn's for 30 years, in fact for most of my life. It was not diagnosed until I was literally at death's door, I kept being sent home and told it was "just a bug, probably". Things have changed a lot since then though and the doctors are more aware of what goes on with Crohn's these days.
What I wanted to say is that I have been managing this since 1995 without any medications, leading a fairly normal life, so even if you do get diagnosed with Crohn's - it's not the end of the world, it's manageable.
Hope you find out what's going on soon and feel better!

I guess I have been managing my symptoms for 4 months now, I have been able to continue to work and know how to respond to my body when the nausea and diarreha hits. At the moment the thing causing the most distress is my lack of apetite and also my muscle and joint pain which seems to be getting worse. I will be writing extensive notes ready for my doctors appointment as i know I will forget something.

Ally1234 said:

I guess I have been managing my symptoms for 4 months now, I have been able to continue to work and know how to respond to my body when the nausea and diarreha hits. At the moment the thing causing the most distress is my lack of apetite and also my muscle and joint pain which seems to be getting worse. I will be writing extensive notes ready for my doctors appointment as i know I will forget something.

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Best to you Ally

Just thought I'd mention a very obvious point about colonoscopy which you might not be aware of if you've never had one (I didn't realise and it came as an unpleasant surprise) - you have to spend most of the previous day preparing for it, special diet, pretty much starvation to be honest, and drinking the dreaded bowel prep fluid, so it can't just be done on an as and when basis. My hospital send the bowel prep sachets in the post a few days before the colonoscopy appointment along with some guidance notes and instructions.

So got my appointment through for Feb 9th at 2.30. All it says is please bring any medication and a urine sample with me. Hopefully going to take the afternoon off work just in case it lasts longer than expected

Glad to hear that, probably a good idea to take time off to give yourself time to think and concentrate on what you want to say/ask.

Ally1234 said:

So got my appointment through for Feb 9th at 2.30. All it says is please bring any medication and a urine sample with me. Hopefully going to take the afternoon off work just in case it lasts longer than expected

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Wow that was fast. I had to wait 3 months from referral!

I think I would cry if i had to wait 3 months. Some days the joint pain alone makes me want to curl up in a ball and hibernate

Hey Ally, your referral story sounds very similar to mine so thought I would share my experience I was referred by my GP to see the GI last year where again I was told to take a urine sample. At the appointment I had my weight taken, abdomin felt and discussed my problems. My GI then referred me for an ultrasound so don't be surprised if you don't get a colonoscopy. I have waited 6 weeks for my ultrasound and I'm actually going this afternoon good luck with your appointment and hope all goes well

We're all here for you Ally.I agree with all of the above posts.Being in the UK the waiting time between Appts.is annoying and stressful.But at least the ball is rolling now,and it won't be to long before you get answers.Good luck.Let us know what transpires.Everyones different (crohnies mantra) and your experiences will help others.

Becks35 said:

Hey Ally, your referral story sounds very similar to mine so thought I would share my experience I was referred by my GP to see the GI last year where again I was told to take a urine sample. At the appointment I had my weight taken, abdomin felt and discussed my problems. My GI then referred me for an ultrasound so don't be surprised if you don't get a colonoscopy. I have waited 6 weeks for my ultrasound and I'm actually going this afternoon good luck with your appointment and hope all goes well

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Hi Becks, i haven't come across ultrasound in my research. What are they looking for? Also this is the first time I am submitting a urine sample. I should also mention that my Aunt has UC so maybe that's why I got an appointment so quick? hope your ultrasound goes well.

They were looking for inflammation/ulcers in the abdomen but unfortunately they didn't find anything today :/ just waiting for my follow up appointment now with the GI as I also did a stool sample but can take 2-3 weeks for that appointment so will see what happens then

Ultrasounds are typically not used to dx crohns
At all
Standard is :

Bloodwork
Mre /cte
Pill cam
And upper /lower endoscopy are used

I am sure they are ruling out something else first with the ultrasound

Good luck

Ah okay. Are your symptoms similar to mine? I always assumed that my problem was in my colon hence probably getting a colonoscopy. I've done two stool samples so far and the last one showed bleeding.

There is actually a fairly new post on here talking about how ultrasounds being used in relation to crohns:
http://www.crohnsforum.com/showthread.php?t=76186&highlight=Ultrasound
But everyone's cases are very different
My symptoms include: diarreha, stomach pains/cramps, lesions in my mouth and occasionally swollen lips/mouth and a few other bits

Ah okay. My first doctor seemed to think I would need a 'camera up your back passage' as he put it, so I've prepared myself for that at some point. It's good to know there are other tests they can use first. I guess my specialist will know more.

Yeah, everyone seems to be so different with their story and seems to vary so much, just hope you get the answers you want, which ever way they come

Ally1234 said:

So got my appointment through for Feb 9th at 2.30. All it says is please bring any medication and a urine sample with me. Hopefully going to take the afternoon off work just in case it lasts longer than expected

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That's great that you've managed to get an appointment so quickly! Like others I had to wait 3 months for mine and initially it was going to be nearly 5 but during a particularly bad few weeks I saw a different GP who phoned them and told them in no uncertain terms to see me quicker as it was getting ridiculous (I was slim before my related weight loss, but at 5'7" I reached 6st 10lbs and she told them enough was enough). However, with the initial appointment things then moved quickly for me, I had more blood tests that day, more stool tests ordered and was booked for an urgent colonoscopy which ended up being 6 days after my appointment. So depending on the consultant and hospital you may not have to wait too much longer to get the next round of tests going.

Oh and for what it's worth, I took a urine sample with me and nobody asked for it, so that was a bit annoying!

Personally I'm still waiting for my biopsy results and diagnosis after the colonoscopy showed inflammation, so I can't really comment or offer advice on the bits that come after that, but I guess my point is you might not have to wait too long for the further tests, depending on the consultant

Thanks for the info. It really does seem to vary so much depending on doctor and patient.
I hope you get a diagnosis soon and can start your journey to remission.

Ally1234 said:

Thanks for the info. It really does seem to vary so much depending on doctor and patient.
I hope you get a diagnosis soon and can start your journey to remission.

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Yes

Hi guys, so my appointment was today. The doctor was great. He talked through my symptoms and when they had started etc as the first doctor had. He said my blood test was really bad and said that he was suprised and annoyed that the first doctor took so long to refer me (Bloods on 12th Jan, referral on 26th) and he also thought the old doctor should have started me on meds. I showed him my marks on my legs and also told him about my body aches. He said without a doubt that I have IBD and prescribed 4 different medicine's even though he hadn't officially made a diagnosis(crohns or UC). He scheduled me in for a sigmoidoscopy on Friday afternoon (said there is probably too much inflammation so a colonoscopy might be hard) and has asked me to hold off taking the medicine until then if I can. I also had an abdominal xray and some more blood taken. I am waiting for my next appointment which should be in 6 weeks. By then I will have some medicine in my system. Apologies for the long post, I spent 2 hours at the hospital and my brain is not working properly anymore but I thought I should post and maybe it will help others.

I am glad you had a great doctor's appointment.

Good to hear you got a result - fingers crossed the meds will work for you.

I'm sorry to hear you have Crohn's but it must be a relief to finally get a diagnosis. I hope you are feeling better soon.

Ally, can you please specify the results of your blood tests?

Plittler they haven't said whether I have crohns or UC yet. They need to do a camera first but he is adamant that it is one or the other.

Smt I'm afraid I didn't ask for specifics on the Bloods as i dont know what any of it means and they don't give them out as standard. Sorry. I was just glad he was taking me seriously and not telling me it was in my head

Ally, I understand you. My best wishes.

Just got a call from the out of hours doctors to tell me my blood test results came back. They asked about why I had the test so I told them about the IBD. They asked if I was feeling paticularly unwell this evening and I said not any more than normal. Apparently my CRP came back at 200 which is really high and they had to let me know in case my symptoms were bad.

Ally,

I am sure they would take care of this. Normal CRP in mg/l varies between 0-5 or 0-10 (depending on the lab). One multiplies this value by a factor of 10 to get in mg/dl units. I presume it is 200 mg/l.

Sending my wishes your way.

Take care.

So had my flexible sigmoidoscopy today. Doctor is 99% sure I have Crohns. Have been admitted to hospital so they can give me a higher dose of steroids into my bloodstream 4 times a day plus oral antibiotics at night. They are also doing a CT and abdominal xray and taking daily blood. Will also be getting an iron infusion on Monday. I'm expected to be in 4 to 5 nights. Doc said he won't consider sending me home until my CRP is below 60.

Sucks to be in the hospital but it sounds like you are getting the care you need. Hopefully this will help with your symptoms.