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06-13-2013, 05:18 PM   #1
Lenatilde
 
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Scared - first GI appointment today

Hi all

I have my first GI appt today - have been waiting for weeks... I'm scared.

Scared they will find something.
Scared they will find nothing.

My husband keeps telling me it will be ok, but I know he's scared too (the sweetie).

Last time I was at the hospital for abdominal 'stuff', I was 18 (many years ago now) and they just took my appendix out - turns out there was nothing wrong with it. No follow-up. No support. I've been fighting with doctors ever since, trying to get some help.

I don't want to be fobbed off again - at least this time I have a good GP, raised CRP and raised faecal calprotectin on my side.

Fingers crossed.

Hope everyone is feeling ok.
xLT
06-13-2013, 06:08 PM   #2
Trysha
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Hope everything went well for you and that you are on the way to
a definite diagnosis with a plan for successful treatment.
We are all interested to know how things go for you so please keep us posted.
Hugs and best wishes
Trysha
06-14-2013, 12:25 AM   #3
Lenatilde
 
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Thank you Trysha, Novice and Amy - I appreciate your support.

It was disappointing, to say the least. They didn't know about my calprotectin levels and admitted I should have been booked in for a full colonoscopy in the first place... So now I'm being booked in, possibly, for a colonoscopy. 3-4 weeks at least. And the gastro may want me to do another faecal calprotectin at that time before a colonoscopy - which is only batch tested so takes an additionalm4 weeks for results!

It was painful (I nearly passed out with the bowel prep), they took a number of biopsies, thought they saw inflammation but then couldn't find it again so though maybe it was just due to bowel prep. They said "good news! We can't see anything" - nothing for me has changed, except I have longer to wait, still being unable to eat and feeling pained and miserable.

My husband is furious - its been a joke of a day and I'm very upset.

I feel like I'm back at square one
LT
06-14-2013, 03:14 AM   #4
bozzylozzy
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hugs to you!

Sorry to have hear it wasnt a good day.. but hopefully a full colonoscopy could shed some light as to what is going on..
Because you didnt do well with your bowel prep - maybe you could have a different one? There are a few different types. I first had klean-prep which was foul and made me so ill. But the 2nd time I had picolax.. which was 2 very small cups and didnt taste too bad and I didnt have any painful bloating (toilet trips were a lot easier too)

All the best of luck to you, and keep us updated xxx
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06-14-2013, 07:03 AM   #5
PVail
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Been here with this one so many times . It is so frustrating that you are having issues and they say they cant decide if its the prep or inflamation. I had the exact thing told to me and yet i was perscribed Asacol and Amitryptiline . Both worked well for a year or so but last colonoscopy saw inflammation of the TI , so it was probably the wrong meds for me.
Just hang in there and just keep pushing
Peter
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06-14-2013, 04:31 PM   #6
Trysha
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Sorry to hear things did not go well for you.
Are you seeing a well experienced GI---does not sound like it, in fact they seem to be unsure of whatever they were seeing, doesn't sound like skilled experience.
Perhaps the biopsies will throw some light on the situation.
Are you able to find a well recommended GI who will do the right things for you.?
I had a bad experience with Kleen Prep but next time around had Pico Lax, much easier on the system and only a couple of cups to get down.
Of course you have to drink plenty of clear fluids for the next 8-12 hours
Bozzy has posted a similar experience to mine.
The waiting around for these tests is unacceptable but it is happening all over the world.
Rooting for you and hoping things will improve.
Hugs and best wishes
Trysha
06-18-2013, 05:15 PM   #7
Lenatilde
 
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You are all amazing - thank you for listening when I just needed to reach out xxx

I am going to my GP tomorrow to get him to sort things out - he is very, very good to me.

The surgeons I had were 'general surgeons'. I very naively thought I would be dealing with gastros in the gastro clinic. Silly me, I guess.

I'm not giving up and my husband is writing a formal complaint.
Massive love to you all - and thank you for your suggestions, and unconditional support.
xxLT
06-18-2013, 05:35 PM   #8
Trysha
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You would be better off seeing experienced GI specialists.
Surgeons know how to cut, and some can be good diagnosticians.
The GI specialists are best for IBD such as crohn's etc.
Good luck with your GP------- sounds as if he is supportive.
Feel better soon.
Hugs and best wishes
Trysha
07-02-2013, 08:53 PM   #9
Lenatilde
 
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Hi lovely, supportive people

I had an appt with a real GI on Monday, who was grand - waiting for the date for my colonoscopy; he is putting me in at the next available time, but could be 2-3 weeks. I shall be booking into a fancy hotel for the prep somewhere comfier than home... not that here isn't bad, just a bit cold. my real GI is fairly certain it's crohn's - we'll wait and see.

still losing weight and have much pain, but have the cat keeping me company today while I work from home.

Trysha - thank you for the advice on the prep. GI mentioned he knows it will be horrible for me, given i'm in a flare and have the fibro, but i have to try to do a good job so he can use water instead of air in the procedure.

hugs to you all - i hope you're feeling ok.
xLT
07-03-2013, 01:15 AM   #10
bozzylozzy
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Glad to hear it Lenatilde
Your GI sounds great..

Do you guys use sedation for the scope in NZ?

good luck with the colonoscopy and keep us updated
07-03-2013, 02:49 AM   #11
Lenatilde
 
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He really is good - my husband didn't have to yell at him

We do have sedation here for colonoscopies, so that should be all good.

I shall indeed let you know how it goes
xLT
07-03-2013, 03:28 AM   #12
bozzylozzy
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Haha! Laughed so much at that.. my husband gets so furious too when doctors fob me off.. before we eventually find out what is wrong with our bowels.. our hubbys will be getting treated for high blood pressure!!!! :P
07-03-2013, 04:14 PM   #13
Trysha
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Hi Lenatilde
Great to hear your good news----thank goodness you are in the hands of a good GI.
Looking forward to hearing how you make out with the scope.
Feel better soon
Hugs and best wishes
Trysha
07-04-2013, 11:56 PM   #14
Lenatilde
 
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Haha! Laughed so much at that.. my husband gets so furious too when doctors fob me off.. before we eventually find out what is wrong with our bowels.. our hubbys will be getting treated for high blood pressure!!!! :P
WARNING: RANT FOLLOWS - CONTINUE READING AT YOUR PERIL

um, well, the lack of yelling didn't last long!! He's been on the phone this afternoon, being rather angry at folk... I had to ring and confirm he was my next of kin so he could 'chat' to them about the recent letter we got (yesterday), which took 30mins and being transferred to 5 different parts of the hospital - and I had been given the extension of the person I had to talk to! Apparently it was wrong.

On the plus side, I got update my details and was sure to let them know his title is 'Dr'. They don't need to know he's a doctor of philosophy... I still think it counts, 'cos he is researcher of health services... so...basically the same, right?

anyway, my Dr Husband was furious that the letter I received was to tell me that in 4 weeks time I will be having a pre-assessment with a nurse, and it made it quite clear I would not be having a colonoscopy at that time. no mention of the date for the actual procedure... GI had said 2-3 weeks for the procedure itself - and definitely next available appt/asap. yup.

So, after some yelling, Dr Husband was told that at the appt in 4 weeks time, the nurse will tell me in basic terms what a colonoscopy is (??!), and they'll firm up times for the procedure itself. when asked about when the 'firmed up time' might be, he was told '2-3 weeks after she's met with the nurse'. The guy he talked to said the person who could actually potentially help only works 9am to 2pm... so he has to call her back on Monday and tell the whole story again.

I cried when he rang back and told me. I could hear him shaking with anger on the other end of the line. I'm not able to eat (haven't in months), in much pain because I can't take my usual painkillers for the fibro, still have to work but my work requires a brain that has been fed so I'm worried about the advice I'm providing... and I'm looking at another 6-7 weeks before I see my GI again and he gets to have a looksee.

my tether - I can see the end of it

How does everyone else cope with this sort of frustration? I'm nearing the end of my coping reserves..

@ Bozzylozzy
@ Trysha

and everyone else too. thank you for being on the other end of a screen.
xLT

Last edited by Lenatilde; 07-05-2013 at 12:07 AM. Reason: added 'lack of' re yelling - the yelling did last long!
07-05-2013, 07:00 PM   #15
Trysha
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Feeling as speechless as you are.
This is a totally unacceptable situation for a patient with such discomfort..
I would be looking for another GI----would this be a difficult thing for you to do.?
I have no idea of your distances from the much needed consults.
I don't understand the meeting with a nurse---is this "pretend" on the part of government programmes, intended to slow down the system to save money?
Perhaps your husband could put on his PhD cap and work something out.
Incidentally the purists have it that it is only the PhD who is entitled to the term "Dr".
I do hope something workable for you will turn up to ease your pain and speed up the diagnosis.
Feel better soon
Hugs
Trysha
07-09-2013, 01:33 AM   #16
Lenatilde
 
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Unfortunately, I had to go with the GI I was given as I'm being looked after publicly - so, free. If I went private, I would have likely seen the same GI (as he is the best around, according to my GP - and I'd believe it from talking to him) but it would just have cost me rather a lot as I don't have insurance.

But! My husband's PhD cap did the trick He asked what they would do if it was their wife, in so much discomfort for so long... when he finally got through to the right department and the right person.

So, now I am meeting with the nurse tomorrow afternoon - apparently it's necessary so they can pass on information about the preparation required for the procedure itself - on the phone, my husband said I could read rather well and perhaps they could send it out? But they said I had to go in and get it...fortunately it's a fairly quick taxi ride away - I would drive myself but I have to take a bit of codeine, which is not overly safe, and my husband is away until for a few days for work. The colonoscopy is now booked for next Thursday. Yay!

(I've never been so excited about something that is so terrifyingly invasive, in truth - but I have to admit I have been dying to use the dancing banana!)

We were told there was some miscommunication between the specialist (in the GI Clinic) and the booking clerk (in an entirely other part of the hospital at Outpatients). My GI had said 'next available appointment' and the booking clerk took that to mean 'no rush - just when something comes up... all good' as opposed to the 'asap' or 'urgent' that he meant.

Tonight, I am sitting in front of a roaring fire, listening to the rain, with my cat curled on my lap, partially watching all the terrible cooking shows my husband hates and traipsing around the internet. I am trying to just relax, for a change, and think of all those wonderful things I actually do have going on in my life - like having people around who care about me immensely enough to yell at people on the phone.

btw, my husband was very happy with your comment about the PhD being the only one entitled to the term "Dr" - he was rather chuffed

Trysha, thank you for caring - it means more than you probably realise.

xlenatilde
07-09-2013, 09:43 AM   #17
Cat-a-Tonic
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Hey Lenatilde, I just saw this thread. Sorry to hear you had to go through so much just to get some decent treatment from your doctors! I'm glad you're getting the scope soon. I also don't understand why you have to go in and receive the information from the nurse. We don't have to do anything like that in the US, they send you a packet of info and the nurse calls you beforehand and tells you a few things and you can ask questions then. That was my experience anyway, it was all done on the phone & through the mail.

Good luck with the scope! As I'm sure you've probably heard, the prep is the worst part. (There's a really good thread here with some good prep tips.) The scope itself, assuming they give you good sedation, is easy peasy. Mine just felt like a nice nap, I woke up feeling refreshed and didn't remember any of it. I hope you have a good scope experience, and that it's worthwhile and gives you some answers. Best of luck hun!
07-09-2013, 01:16 PM   #18
Trysha
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Hi L
Looking forward to you coping with the prep, you will do it I know---and then the colonoscopy., you will be so sedated you won'tknow anything and its a relief after the prep.
I actually felt a bit better after my scope and I was in a flare when it was done.
Could it be that your Dr husband made a difference in that suddenly you are given a prompt appointment------hope so. You could use that in the future.
Good luck with everything, will be with you in spirit next Thursday.
Coincidentally my appointment with the GI is on Thursday too.
Feel better soon
Hugs Trysha

Last edited by Trysha; 07-09-2013 at 10:32 PM.
07-09-2013, 09:38 PM   #19
dannysmom
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Good luck with your scopes!
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07-09-2013, 11:00 PM   #20
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Hugs for being through so much medical crap!! Your husband sounds like a gem, and I'm so glad you've finally got the colonoscopy figured out. I hope you get answers dear! Being undiagnosed is soooo hard; not knowing what is wrong, not having doctors believe you. But we all believe you here. We know you must be having such a hard time. And we want you to get better. Stay strong and keep us posted.
07-15-2013, 11:39 PM   #21
Lenatilde
 
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Hi lovelies

It's not on Thursday after all ... (@Trysha - I shall be sending you hugs and love on that day for your appointment)

I'm booked for Monday afternoon. Husband and I are booked into a hotel room for Sunday night and Monday night - yay We live in the city, and the hospital is not very far away, but I'd rather be someone warm, comfortable, with a bathroom that someone else has to clean! We're waiting for The Killing to arrive (Danish version) and will just watch that and be looked after by my lovely man (@Essieluv - I really am lucky - he's a very good man).

@Cat - thank you for the prep tips. It's the prep I'm mostly worried about - with my fibro playing up already, and how it felt when I had mini-prep for the sigmoidoscopy, I know it's going to be awful... but as the nurse said, I have to think of it as medicine and I just have to do it - and it won't last forever.

Apparently my GI is renowned for being great - so that's good. The nurse at my 'pre-assessment' (which was really a waste of time... but she was lovely at least) said that about 80% of his patients don't have sedation for the colonoscopy because he's just that good... I must have looked worried because she followed up quickly with 'we'll put a line in you anyway, we always do, just in case you need it or want it'. hmm. My GI said to be to do a super job of the prep so he can use water instead of air, so it's more comfortable for me. He admitted the prep will be hard, with my fibro, but he promised he will make the procedure itself as comfortable as possible.

I had an awful day yesterday and am feeling shattered today. It will be sorted in time, I know... but it just feels like my life is on hold while I wait and wait and wait. I haven't cried very much through this whole thing - I cried last night... which was embarrassing - I'm usually very strong. @Essieluv - it helps to know you're all here and believe what I'm going through.

Good lord, I can go on. I'm so sorry. This really has all made me so self-absorbed

to you all
sending love and thanks to all my supportive IBD folk.
xLT
07-16-2013, 02:57 PM   #22
Trysha
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Hi Lenatilde
It is natural for you to be apprehensive but you will be ok on the day.
I think I would be asking for the sedation though---especially with your history.
These appointments make me feel like life is on hold too.Its bad enough to have crohn's but harder when other organ problems arise.Like you, will be glad to get it over and done with.
Look forward to being pampered in the hotel and make the most of it. It will be nice for you not to have to do any housework!
Will be thinking of you next Monday----hugs and prayers--
Feel better soon
Hugs and best wishes
Trysha
07-22-2013, 06:50 PM   #23
Lenatilde
 
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@trysha - how did your appt go? Was thinking of you on Thursday.

Mine, yesterday, was less than ideal. We also had a major earthquake here in my home city (wellington) just as I was about to down the first litre of prep. Timing was impeccable. 6.5 magnitude and 12km deep. We'd had two earlier severe ones but this one caused a bit of damage - no deaths, fortunately, and minor damage to buildings in the CBD, where we were. We have had a large amount of strong aftershocks since.

Nothing showed on the colonoscopy. I was only partially sedated so I got to see what was going on. They rushed me off for blood tests and am awaiting results to see 'what next' - capsule endoscopy, MRI... he's not sure. Another CRP test to see how/if the inflammation is hanging as well as a CgA (tumor marker, but also can be raised in IBD - he doesn't seem overly excited about calprotectin already being raised...). He is as confused as me. Took a number of biopsies to have a looksee.

I was a bit upset - same old reactions from ppl "what a relief - so you're all good and back to normal now". Afraid not... Nothing has changed. Still not eating normally. Am losing weight still, which GI is worried about. It's slowed down considerably, which is good. Pain still there - maybe now they'll listen to me when I tell them where the pain is? I tried before, but they said it was probably just the system being all gee-d up from the ileum. They were more interested in the pain by my belly button, but the ones up higher - by the bottom of my ribs and around my back, are they worst.

Back at square one? Maybe. At least no obvious signs of CRC.

Had to take some of my 'mothers little helpers' today - it's just all a bit much. Working from home - they will still receive my weekly report (hopefully). Makes me feel useful. No-one could get in the building yesterday or this morning anyway because of the earthquake, and the lifts are out - 10 floors a bit much to climb when no energy!

Hope you are all ok.
LT
07-24-2013, 09:30 AM   #24
Trysha
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Hi Lenatilde
Thank you for thinking of me.
The surgery went well but recovery was a bit of a nightmare.
I think they gave me too much morphine and it triggered fierce pain in all the crohn's areas.
Then I had a vasovagal attack so they tell me and was soaked in perspiration.
Finally I made an excellent recovery and feel just great now that its all over ,well for now anyway. Follow up in three weeks., for biopsy results and future plans if needed.
Hope not. Enough to contend with having crohns.
I was very concerned to hear of your earthquake and hope everything is OK with you and that your house is still standing. What a nightmare to endure in addition to all your health issues.
Sorry to hear you are still suffering and hope things will improve for you.
People are very insensitive and I know the times when I have been flaring badly people say ---you are looking good---you don't look ill....etc
Very annoying .Who wants to look ill anyway.
Now people are saying---you look a bit washed out after the surgery grrrr---best to ignore them but hard--- to say the least.
Life can be an exciting roller coaster for some of us healthwise....which we would all rather not have.
Feel better soon
Hugs and best wishes
Trysha
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