I need to get a grip

Ames

Thanks, that's reassured me (a bit). As I said, I can't have sedative, but the doctor did mention the spray. I think it's Coeliac's they're mainly checking for, although they seem to be doing every test known to man! It's good that they're being thorough though. I just hope the appointment comes through soon, I think the waiting and thinking about it is half the problem.

It's good to hear you say you wanted the second test, I've been thinking I must be really strange for wanting another colonoscopy so they can see what's going on. I know I've developed diverticular disease since the last one so at the very least that can be checked out by someone who knows what they're doing.

I've also got an appointment at the end of next week with immunology, so I'll find out if the increased treatment has worked or not.

melbury

Ames wrote: »

Thanks, that's reassured me (a bit). As I said, I can't have sedative, but the doctor did mention the spray. I think it's Coeliac's they're mainly checking for, although they seem to be doing every test known to man! It's good that they're being thorough though. I just hope the appointment comes through soon, I think the waiting and thinking about it is half the problem.

It's good to hear you say you wanted the second test, I've been thinking I must be really strange for wanting another colonoscopy so they can see what's going on. I know I've developed diverticular disease since the last one so at the very least that can be checked out by someone who knows what they're doing.

I've also got an appointment at the end of next week with immunology, so I'll find out if the increased treatment has worked or not.

Do hope you get the appointment through soon and best of luck. Please try not to worry too much.

Ames

Just thought I'd update.

First, all the appointments...

Haematology refused the referral, which is fine by me and my consultant. He couldn't understand why the other specialist had made the referral - she was young and probably a bit gung ho.

Immunology - increasing the dosage of my infusions has made a huge impact, bringing my levels up to almost normal. I hadn't realised how worried I was until I got the results.

Rheumatology - not much happening, just lots of tests.

Gastroenterology - I saw them at the beginning of March and they said I needed a colonoscopy and endoscopy. I chased it about a month ago and I hadn't been put on the waiting list. The secretary said she'd put me on it as urgent as I'd already been waiting a couple of months but I still haven't heard anything. (I mentioned it to my immunologist and he said they're overwhelmed because for some reason they're finding it hard to recruit. I can think of a couple of reasons why that particular specialism isn't popular...)

Psychiatry - My CPN has referred me to psychology, but there's a waiting list of a year. I'm not sure if the referral's been accepted as she had to cancel our last appointment and I'm not sure when the next one will be.

As far as pain goes, I've decided to give Hydroxychloroquine another go. I tried it a couple of years ago and it helped with the pain, but sent my anxiety levels through the roof. Since I'm on new anti-depressants I hope it'll be different this time. I'm going to speak to my CPN and GP about it first though. Maybe I can just use it for a few months at a time when I'm having a flare.

I've also bought a mobility scooter. Until I started uni again in September I hadn't realised how much I organised my life around good days. I haven't used it much yet, but it's great to be able to do things without being in severe pain for days. And it's good to know I can do things if I want to. So hopefully things will be more level now.

Confuseddot

Ames wrote: »

Just thought I'd update.

First, all the appointments...

Haematology refused the referral, which is fine by me and my consultant. He couldn't understand why the other specialist had made the referral - she was young and probably a bit gung ho.

Immunology - increasing the dosage of my infusions has made a huge impact, bringing my levels up to almost normal. I hadn't realised how worried I was until I got the results.

Rheumatology - not much happening, just lots of tests.

Gastroenterology - I saw them at the beginning of March and they said I needed a colonoscopy and endoscopy. I chased it about a month ago and I hadn't been put on the waiting list. The secretary said she'd put me on it as urgent as I'd already been waiting a couple of months but I still haven't heard anything. (I mentioned it to my immunologist and he said they're overwhelmed because for some reason they're finding it hard to recruit. I can think of a couple of reasons why that particular specialism isn't popular...)

Psychiatry - My CPN has referred me to psychology, but there's a waiting list of a year. I'm not sure if the referral's been accepted as she had to cancel our last appointment and I'm not sure when the next one will be.

As far as pain goes, I've decided to give Hydroxychloroquine another go. I tried it a couple of years ago and it helped with the pain, but sent my anxiety levels through the roof. Since I'm on new anti-depressants I hope it'll be different this time. I'm going to speak to my CPN and GP about it first though. Maybe I can just use it for a few months at a time when I'm having a flare.

I've also bought a mobility scooter. Until I started uni again in September I hadn't realised how much I organised my life around good days. I haven't used it much yet, but it's great to be able to do things without being in severe pain for days. And it's good to know I can do things if I want to. So hopefully things will be more level now.

Sounds a bit more positive :T hope you get the rest of your tests sorted soon.

50Twuncle

You hopefully are aware of this already
http://www.nhs.uk/service-search
Get a rating on doctors surgeries (how honest they are is another question)

Ames

Thanks Confused, I still haven't got an appointment so I'm going to ask my therapist to help me phone to chase it up on Friday.

50Twuncle, yes I'm aware of that site. The ratings for my current GP have plummeted over the last few years. The problem is finding another one. I did get a personal recommendation a few years ago from a fellow service user, but the accessibility at that one seems very poor - you have to specially book a ground floor room because the treatment rooms are all up stairs, and there's no parking.

I don't think I can handle changing right now, since it'd mean getting used to new receptionists, new systems, and a new doctor. It'd just be too much, I'm struggling enough as it is.

Ames

Finally had the endoscopy and colonoscopy today, nearly four months after seeing the consultant who recommended them. Interestingly there was inflammation in my stomach, where I don't have symptoms. I was impressed that they tested for H. Pylori straight away (it was negative), and I was given a copy of the report which was a pleasant surprise. So now I have to wait for an appointment to see gastroenterology for the biopsy results. The hospital said I could go to my GP for them, but my GP refused to give me the results of the last tests gastro did, so I'll have to wait.

It was a good three months between referral and seeing gastro, so it's anyone's guess how quickly I'll see them again. Presumably they'll get in touch if anything shows up.

The guy doing the scopes did say there's a kind of 'fake' coeliac that people with my immune problems get, which is interesting but I can't remember what he said it was called to look it up.

So, back to wait and see.

brokeinyorkshire

Ames wrote: »

I'm so sorry to hear about your bowel problems, it sounds awful.

At the moment it's more diarrhea than constipation, it goes in phases though.

I've had a colonoscopy without sedation before which was fine, it's the endoscopy that I'm worried about. I know I'm being irrational but it's because of it being next to my windpipe I keep thinking I won't be able to breathe. I know I will be able to, so I'm being silly. At least it means I should be fine when it starts.

I've just been reading about lidocaine patches, I'll suggest it next time I get chance.

My issue with the BPD is that I don't cling to inappropriate relationships. In fact I do the opposite, I'll avoid anything that resembles even friendship. And my head's really messed up about whether I can trust my judgement about a load of stuff. No-one's actually sat down with me and explained what BPD is and why I've been diagnosed with it - all the psychiatrist said is that it's when something happens in your childhood that affects how you form relationships as an adult. Hopefully when I get a copy of the letter I'll understand better.

Ames.

I know this is easy to say but please try not to worry about the Endoscopy.

I had to have one last year and I was fast tracked because of a dodgy blood test result and having trouble swallowing so I was extremely worried!

I opted for no sedation too because I drove there straight from work.

I can honestly say that the thought of it was far far worse than the reality. The staff were fabulous and really out me at ease. They spray a numbing agent into your throat and pop a mouth guard in. At that point I closed my eyes and I only gripped once when the tube went down. I took the advic of the staff and concentrated on my breathing and it was all over in acouole of minutes. I was given the result there and then and given a clean bill of health.

I walked out of the Endoscopy Unit feeling elated beacaus I had felt so anxious and worried beforehand.

Edited to add, apologies, didn't see your previous post. Glad you got through it ok.

Good luck,

Ames

Well, I got a letter last week asking me to make an appointment to see gastro, which presumably means the results are back and have shown something. I managed to phone them (yay me), and have an appointment in the middle of next month. Fingers crossed it's one of the things they're looking at which has simple medication as treatment.

I went to see my GP today and found out by accident that I have antibodies that put me at higher risk of DVT, so I have to take aspirin every day and something to stop it causing stomach problems. Rheumatology don't copy me in to letters, so I didn't know about it. If I hadn't had to see my GP I might not have known about it for up to six months, until I see rheumatology again. I've also not been able to speak to anyone about it so I don't know what the risks are, what I need to keep an eye out for, or anything about it other than what I googled. I suppose the hospital assumed that my GP would call me in about it, whereas my GP thought the hospital send letters out automatically.

So in future I either need to see my GP a couple of weeks after every hospital appointment, which is a waste of his time, or pay my GP practice to photocopy letters for me, which is inefficient and expensive.

But at least things are moving on and some big bits of the picture are starting to fall in to place.

DomRavioli

Ames wrote: »

Well, I got a letter last week asking me to make an appointment to see gastro, which presumably means the results are back and have shown something. I managed to phone them (yay me), and have an appointment in the middle of next month. Fingers crossed it's one of the things they're looking at which has simple medication as treatment.

I went to see my GP today and found out by accident that I have antibodies that put me at higher risk of DVT, so I have to take aspirin every day and something to stop it causing stomach problems. Rheumatology don't copy me in to letters, so I didn't know about it. If I hadn't had to see my GP I might not have known about it for up to six months, until I see rheumatology again. I've also not been able to speak to anyone about it so I don't know what the risks are, what I need to keep an eye out for, or anything about it other than what I googled. I suppose the hospital assumed that my GP would call me in about it, whereas my GP thought the hospital send letters out automatically.

So in future I either need to see my GP a couple of weeks after every hospital appointment, which is a waste of his time, or pay my GP practice to photocopy letters for me, which is inefficient and expensive.

But at least things are moving on and some big bits of the picture are starting to fall in to place.

Ames sweetie! It doesn't mean they have found anything - they probably just want to see you to assure you given your previous nerves. I worked for a fair while in gastro and a routine follow up is normal after gastro and endo, so don't get yourself worked up, as it is very very normal, usually to discuss where they go from there (regardless if anything has been found - usually to ask what you want to do next, MRI, swallows, flexible sigmoid in case its the other end etc).

If you ring rheumatology (or ask someone to call for you), they will happily send you a copy of letters they send to their GP, but you do have to ask - most people used to just throw them away, so its now an opt in, rather than an opt out for a lot of places. Its dead easy to do, just ask for the secretary (if you're still under them) and they will pop a note on saying you want copies.

Try not to worry about what in all likelyhood is a routine follow up. I used to send out thousands a week.