First GI Appointment - Nervous!

[kellehbeans]

Hi all,

I have already had a little look through the forums at 'First GI Appointment' threads, but I'm still feeling nervous, so thought I would reiterate this question, to hopefully calm those nerves!

The reason why I am so nervous, is because I am convinced in my head, that they're not going to find anything wrong, and will diagnose me with IBS. I am worried they are not going to offer me any other kind of treatment, any tests (as my blood tests came back normal, minus mild anaemia and so did my calprotectin stool test), and I have no form of painkiller!

What do I expect? My letter says I will probably want to bring a book, and probably will want somebody else to drive me. Luckily for me, my Mum is not yet on holiday and has been saying for the last 4 months (yes, I've waited that long!) that she will take me.

I've had a lot of new pain just in the last week, and I also have chronic fissures and inflamed haemorrhoids (so inflamed, my rectum just literally tightens up!) that are always caused by diarrhoea. (The pain is tamed by prednisolone suppositories, not sure about the inflammation, but the instant I come off of them and get diarrhoea, BAM!). I am not sure if an anuscope is long enough to diagnose proctitis.

So what I have done, is write a huge summary of the symptoms etc. that I have been having, including dates of when something happened (I logged everything since the day I got told I was having a GI appointment!), then realised that was too detailed, and did a summary... of a summary. I have also attached my blood test results from the last 6 months. Is this enough? What do I expect, and what else do I need to bring?

 

[Caitlin84]

You sound really prepared. Try not to be too nervous. If they don't give you answers that you find satisfactory, get a second opinion. Good luck and let us know how it goes!

 

[kellehbeans]

Caitlin84 - I think it's because I've had 4 months to think about it! I am extremely nervous if they DO offer me some kinds of testing, as I am absolutely petrified of the idea of anaesthetic. No idea why, I just have nightmares about it - I've never been put under in my whole entire life! But, I am determined to find out what is wrong with me, so will go through it all. I can imagine there are going to be a few trembles and tears along the way!

Thank you for the support! Will definitely be updating once I have been.

 

[DEmberton]

You sound more prepared than most. Don't expect answers on the day; you may be waiting for months yet for tests, unfortunately.

If you have a colonoscopy they usually want you to have a sedative, but you won't be unconscious like a general anaesthetic, and you don't have to if you're brave. The other likely test is a CT or MRI scan, but you'll be wide awake for those. So no need to worry about anaesthetic for the tests, though of course if you end up having surgery you will be under.

 

[kellehbeans]

@DEmberton - Definitely wasn't expecting answers in all honesty, was more expecting to be fobbed off with IBS and no further testing. Although, I am now feeling extremely dizzy, so that's another thing to add to my list. It keeps happening, but today is pretty bad.

I will probably be put under for that, or maybe the first time, I will be brave. But, I think I will face my fears of anaesthetic! MRI I'm only concerned about, because I now have 8 piercings and a lot of them are hard to get out! I'd have to take a trip to get them removed (and then put back in).

Also, just realised you're from Oxfordshire! Hello neighbour!

 

[kellehbeans]

So an update. I am waiting for a letter for an appointment for an ultrasound and a sigmoid scope, which will probably be in 6 weeks time. Read that IBS flares last 2-4 days. Think mine has been a bit longer than that than at 8 months! From my blood tests results and stool test results, it's more indicative of IBS, but from my symptoms, he knows something is definitely not right.

My GI said that if the ultrasound comes back normal (checking my ovaries are OK etc.) and the sigmoidoscopy comes back normal, then he will get me an MRI booked on my pelvis, and will prescribe me a low dose of amitriptyline to help with the pain as nothing else has appeared to help me.

 

[Bunty]

Kelleh, I had a sigmoidoscopy this week,it really is nothing to worry about.
As you probably know, it only goes up the first part of your bowel, you can feel it inside but it doesn't hurt at all. It was actually quite interesting to watch on the screen, to see inside myself. They took some biopsies, which again I could see, but again, you just don't feel anything. It was over and done with in about ten minutes.
There's no need for sedation as it's not painful and takes far less time than a colonoscopy.
The nurse gives you an enema before the procedure, squirts 500ml of fluid inside you and then leaves you in privacy for it to work, took about five minutes.
Afterwards, you're given your own copy of the report and talked through it by the nurse.
I'm glad you're getting closer to a diagnosis
Bunty x

 

[kellehbeans]

Kelleh, I had a sigmoidoscopy this week,it really is nothing to worry about.
As you probably know, it only goes up the first part of your bowel, you can feel it inside but it doesn't hurt at all. It was actually quite interesting to watch on the screen, to see inside myself. They took some biopsies, which again I could see, but again, you just don't feel anything. It was over and done with in about ten minutes.
There's no need for sedation as it's not painful and takes far less time than a colonoscopy.
The nurse gives you an enema before the procedure, squirts 500ml of fluid inside you and then leaves you in privacy for it to work, took about five minutes.
Afterwards, you're given your own copy of the report and talked through it by the nurse.
I'm glad you're getting closer to a diagnosis
Bunty x

Wow, thank you Bunty! That was very helpful and insightful!

I know the sigmoid only goes up so far, but how far is that? I have a stabbing pain probably mid/lower left side, and that's why he's decided to do a sigmoid. I am so scared they are going to miss something and I am going to be put aside.

The enema does not sound very nice, and may sound like the worst part of the procedure! I now have to wait for my letter, and I actually cannot wait to get it over and done with! I'm glad they give you a copy of the report, that is always extremely useful and I like having the medical notes myself.

Thank you very much!

 

[Bunty]

It goes about 2ft or 60cms, which sounds a lot but if you look at pictures of the colon from the anus, through the rectum and then up to the bend where the transverse colon starts (I think that's what it's called, the bit that goes across) then that's about right. It's a very smooth passage as there's only a small bend at the beginning for the scope to negotiate.
They put you in a hospital gown and a lovely pair of paper shorts with a hole at the back. The nurses are so caring and kind, and very concerned about keeping your dignity, there's little or no embarrassment. After they've put the stuff in you, they leave you lying on your left side so it can do its job and ask you to hold it in for as long as you can.
Once you've 'been' you let them know and then you walk through to the scope room. You lie on your left side facing the screen, and the procedure begins, it really is over very quickly, about ten minutes. The nurse holds your hand and chats quietly to you while it's being done. Once it's over they wheel you on the trolley to the recovery ward, but if you've not had sedation then they just check your blood pressure and you can get changed and go into another room for a cuppa, my husband was waiting there for me.
The nurse called us through, gave me the report and explained it, and then we left.
I doubt they'll miss anything Kelleh, sounds like you're being very thoroughly tested.
If you have any more questions about it, please ask
Bunty x

 

[kellehbeans]

The paper shorts thing made me laugh! But ahhh, I thought it was only have way up the left side! I am taking one of my parents with me! A cuppa sounds like a perfect thing for afterwards! Did you have no sedation what so ever? I am quite pleased at how seriously they are taking me! Did they find anything on your scope?

 

[Bunty]

To go the full way up while they're in there makes sense though, so they can see as much as possible. It's a straight run too, with no more bends, so very easy and smooth.
No, no sedation at all. I think the expectation is that with a sigmoidoscopy you won't want it/don't need it, but if you do, then it's no problem and you're asked if you want it. I had a colonoscopy last year with sedation but to be honest I think I'm resistant to it as I'm so nosey and it had little or no effect.
They found lots of inflammation in my rectum...could have told them that, diverticula which I already knew about, and evidence of crohns which I also already knew about. The six biopsies I'll find out about on a week or so. Nothing I didn't already know to be honest. The problem is that even on high dose of prednisolone it's not settling and Ive been bleeding continually since 1st June.
Good idea to take mum and dad with you, three heads are always better than one and they may pick up on something which you miss if you're stressed and nervous.
Trust me Kelleh, you'll be fine
Bunty x

 

[kellehbeans]

Well, hopefully it won't be too bad.
I will probably request the sedation, but I think I will try and resist the need to use it. I'm also quite nosey, so I'd like to see what it is like! When they're looking for Crohn's, what do they actually see? I know in UC you'll see ulcers, but not entirely sure about Crohn's!
Sorry to hear that you have had a bad time recently! Hope you feel better soon! I was put on Pred myself due to chronic piles/inflammation/fissures. They helped ease the pain, but not entirely help. When the swelling went down - out came the D. Not such a great thing!

Parents are only really my fallbacks to help me get home, as I am pretty sure I will not be allowed to drive home, especially if I end up with gas and air!

 

[Bunty]

I don't know what they see, probably inflammation, it just says on the report. When I had the colonoscopy last year there were patches of inflammation all round the entire large bowel. And you couldn't see a normal bit of my rectum due to all the ulcers.
I've been on pred since 1st June, tapered down to one then had to go right back up to eight and start all over. They're keeping me on eight till the bleeding stops this time, before I can even start to taper. I keep focusing on Christmas by which time I should, hopefully, be well clear of pred. At least the pred has got rid of my piles though
They're very strict about you not driving if you've had any sedation, be it through a vein or gas and air. If no one comes to collect you they escort you to reception and call a taxi. And you can't cook either, far too dangerous
Bunty x

 

[kellehbeans]

Oh, ouch! I am quite interested to see what mine looks like - although I don't really know what I'd be looking for! I'll just have to trust the doctors on this one. Although, are biopsies taken for bacterial testing? I am not entirely sure on that one.
Let Christmas be super-Christmassy with celebrations of no Pred! My piles are still there, but it does not feel so tight any more, so let's hold on to hoping that they go! Pred is very good, but very bad at the same time! I can't imagine how much hell you go through on it!
Haha, I think that'll be me eating something else. I wonder if I'll feel OK afterwards to go back to work!

 

[DEmberton]

Do they make you do the prep for a sigmoidoscopy? Seems a bit odd to make you do all that and not look all the way up.

Certainly for the colonscopy they get a bit stroppy about having someone pick you up even if you don't have the sedative. Last time I ran round at the last minute trying to find someone, but then on the day they let me walk home by myself after tea and biscuits.

 

[kellehbeans]

Do they make you do the prep for a sigmoidoscopy? Seems a bit odd to make you do all that and not look all the way up.

Certainly for the colonscopy they get a bit stroppy about having someone pick you up even if you don't have the sedative. Last time I ran round at the last minute trying to find someone, but then on the day they let me walk home by myself after tea and biscuits.

Yes, I will have to go and have an enema before they can do it. From what I have learned from Bunty, they give you something and then leave you to it, and try and get you to hold it in for as long as possible.

Do they offer you tea and biscuits? :eek2: I think I'm in just for the tea and biscuits! I was in just for the tea! I don't really have the option to walk home because it is about 15 miles away along a very busy road.

 

[Bunty]

No, you don't do the home bowel prep for sigmoidoscopy. They just give you 500lm of enema at the hospital just before you have the procedure. You only need that last two foot of bowel empty as that's the only bit they're looking at and that's what the enema clears out. There's no restriction on what you eat or drink beforehand either, you just eat and drink normally.
They do ask about warfrin and iron pills, and a couple of other things, it's all in the literature which comes with your appointment letter.
Walking home is one thing, driving is a definite no no!
I don't think they look for bacteria in the biopsies but could be wrong about that, it's not something I've really thought about. I might ask at my next appointment.
Bunty x

 

[kellehbeans]

No, you don't do the home bowel prep for sigmoidoscopy. They just give you 500lm of enema at the hospital just before you have the procedure. You only need that last two foot of bowel empty as that's the only bit they're looking at and that's what the enema clears out. There's no restriction on what you eat or drink beforehand either, you just eat and drink normally.
They do ask about warfrin and iron pills, and a couple of other things, it's all in the literature which comes with your appointment letter.
Walking home is one thing, driving is a definite no no!
I don't think they look for bacteria in the biopsies but could be wrong about that, it's not something I've really thought about. I might ask at my next appointment.
Bunty x

That's quite helpful! I just read on the NHS website (I was looking for free tea and biscuits on the things that happen ) that there are some that require you not to eat for several hours. I may just not eat in the morning anyway, and have something nicer on the way back out of the hospital. Maybe Subway breakfast or something, seeing as that's on the way.

I was going to say, they'll probably send me some leaflets or something when the letter gets sent out. Bunty, how long did you wait for them to send your appointments out?

If you find out what they do the biopsies for, let me know! I'm quite interested. I'm guessing they can test them for inflammation levels even if it's not visible?

 

[Bunty]

I did the same as you Kelleh, and actually rang the endoscopy department as the information they sent differed somewhat from what's on the web. Maybe it depends which health authority you come under, they may have differing ideas, I don't know.
I had to eat something in the morning to take the pred, the nurse on the phone said that was fine, have a normal breakfast. My appointment was 1.30pm.
My consultant marked mine as urgent so it came through within two weeks of seeing him. I think it could normally take up to six weeks, although I've learned over the last year to chase appointments up myself and always ring the hospital after a week or so to see if the appointment is in the system. Twice I've been offered a cancellation by doing that.
Defo a subway treat afterwards, me, I'd have a Big Mac
Bunty x

 

[kellehbeans]

I did the same as you Kelleh, and actually rang the endoscopy department as the information they sent differed somewhat from what's on the web. Maybe it depends which health authority you come under, they may have differing ideas, I don't know.
I had to eat something in the morning to take the pred, the nurse on the phone said that was fine, have a normal breakfast. My appointment was 1.30pm.
My consultant marked mine as urgent so it came through within two weeks of seeing him. I think it could normally take up to six weeks, although I've learned over the last year to chase appointments up myself and always ring the hospital after a week or so to see if the appointment is in the system. Twice I've been offered a cancellation by doing that.
Defo a subway treat afterwards, me, I'd have a Big Mac
Bunty x

I've actually just got my referral letter through, but I can only make an appointment between 10-12 and 2-4. I tried calling at 12:40 (I didn't read the letter properly!) but they just shunned me off!

Sounds like a good plan, I think the sooner the better with me! But, ooh, maybe McDonald's may be my treat also, they have some awesome new burgers at the moment - I especially have my eye on a chicken one that is in Indian style at the mo!

 

[Bunty]

That's good Kelle, you're getting closer... Another ten minutes and you can try again. Hope you can get a quick appointment.
I'll let you into a secret, I've just had a Big Mac and large fries for lunch, it really hit the spot, I'm getting so jaded about meals and sometimes only a Big Mac will do, although that Indian style chicken sounds tempting.
Good luck, let us know when you've got your appointment.
Bunty x

 

[kellehbeans]

Haha, I will do! Hopefully it won't be too far in the future, and hopefully I can get one before I go on holiday!
Wow, you lucky thing! I just had a rice, mushroom and chicken soup from Morrison's. It's one of my favourite soups, and it definitely hit the spot. I'm meant to be going out tonight, but looking at the menu is hell! It's quite easy to just choose some salad though.

 

[Khal]

Hi, my name is Scott and I have been to many appointments and they're not so bad, the worst part is the waiting. I know it can be frustrating not knowing what is wrong with you and not getting answers that you want but it takes time. I was ill getting blood tests, stool tests, etc for around 2 years u until they did this uh scope up your bum and one down your throat while you are asleep ofcorse. It wasnt that bad I woke up with a sore throat and got lots of icecream and they managed to diagnose me with crohns witht he samples they took with the tube (the tube had a camera on it and they took biopsies)

 

[kellehbeans]

Hi Scott, nice to meet you! I can definitely account for the annoying waiting times! I know that when I was waiting around I hated it, but I think I'm just impatient! I roughly knew what to expect when it came to my first appointment, I was just nervous and wanted to make sure I was definitely prepared.

My GI was pretty blunt and straight to the point, but turns out he is actually extremely useful. I did stun my GP yesterday, he did not know what to do with me. Both GI and GP are perplexed at my scenario because my blood tests and stool tests have come back near enough perfect. They've given me codeine for the pain at the moment, and I am going to stay away from Prednisolone until my scope so it does not clear up any inflammation until I've properly been diagnosed.

Bunty, I just rang up! My appointment is going to be 30/10 at 10:45. It was going to be on the 16th but I am going up to Scarborough on that day!

 

[Bunty]

Ooh now let me think...Scarborough for the day, or a camera up the bum???
So that's about six weeks away, par for the course really and although long enough, it's not too long to wait really. At least you have something to work towards now.
I've just found out they're going to put me on self injections of adalimumab, or infliximab infusions, maybe next week or maybe when I see the consultant on 9/10. They're sending all the info out so I can be well informed and decide what I want to do.
And I'm to stay on 40mg pred till 9/10 too, great
Onwards and upwards eh Kelle
Bunty x

 

[kellehbeans]

Ooh now let me think...Scarborough for the day, or a camera up the bum???
So that's about six weeks away, par for the course really and although long enough, it's not too long to wait really. At least you have something to work towards now.
I've just found out they're going to put me on self injections of adalimumab, or infliximab infusions, maybe next week or maybe when I see the consultant on 9/10. They're sending all the info out so I can be well informed and decide what I want to do.
And I'm to stay on 40mg pred till 9/10 too, great
Onwards and upwards eh Kelle
Bunty x

Scarborough for a long weekend! I have to drive up to Bedford first, then my boyfriend is driving the rest of the way. Of course we don't want to go too late + the no driving thing would have been atrocious, so safely placed on the 30th.

Oh dear, do you know what you want to do? What is going to help you decide? My stomach is hurting a lot today, and I feel so drowsy from the codeine, I just feel a little dead to the world this afternoon!

Hope everything goes smoothly for you, especially the tapering down on the Pred! That must be dreadful!

 

[kellehbeans]

I've been there before, and last year we actually have quite nice weather! Being a southerner, I did struggle a little with the cold.

Hope you get on well with them! I know this sounds weird, but I hope I get the chance to try things like that too. Today sucks. Codeine is not even touching my stomach ache.

 

[kellehbeans]

Bunty, here's a weird one - the hospital have sent me the stuff to do the enema stuff myself - already! They want me to do it an hour and half before I arrive at the hospital for my appointment! I definitely was not expecting that!

 

[FrozenGirl]

That's what my hospital does. You do the enema at home an hour before you leave for the hospital. I can't eat from midnight the night before until after the procedure. It is easier at home. Nice and private, you can be in your own washroom, watch tv while holding it. Etc

 

[Bunty]

It must depend on which health authority you come under, as to how and where the enema is done.
If you have any questions Kelle, or are unsure about even the smallest thing, give the endoscopy department a call, they're really helpful and will reassure you. They may even explain why some enemas are given at the hospital and some, like yours, are done at home.
I hope you're feeling somewhat better today, I see you've been having a lot of pain recently , it'll pass, just hang in there. One of the (few) good things about getting older is no more periods...yay!
Chin up kiddo.
Bunty x

 

[kellehbeans]

Possibly! Well, that will be done, and will be a complete day off of work! Now to focus on those tea and biscuits after the hospital appointment, and also what is for lunch.. :lol:

I just got my appointment for the ultrasound too, that is on Thursday! It's at the Royal Berkshire hospital though, and I am not too fond on parking in their car park. It just stresses me out to the max when I have to park in there. Try to avoid it at all costs. It's also a stupid time of the day, at 3:25, when I should be at work and all the school kids are coming out... eek!

Yeah, pain hasn't been the best of things. I've taken myself off of the Laxido and codeine, because the Laxido was literally going straight through me and giving me really bad diarrhoea, even while on codeine! It was just 1 day and a half of period pains, and it stopped flaring up so badly. I was just left with some nasty diarrhoea and pain. It seems to have got a little better today, but just ate some lunch and now it feels weird again. Guess I'm just going to have to hold on and not eat something else - as that usually helps - temporarily at least!