I'm no surprised you are weary & fed up, and, I would imagine depressed also, with what has been happening to you recently.

Have you been given a reason what was causing the intense pain when they tried the procedure? Surely it can't have been something that was visible on the monitor as surely the doc would have seen it??

Sending you oodles of virtual hugs Sanji

Sanji

I'm surprised that you weren't given an anaesthetic when they did the colonoscopy. It must have been awful. I had scans, MRI a colonoscopy and surgery last year and apart from having to drink the foul liquid everything went smoothly.

I understand your weariness with the whole process, the medical profession seems to really be messing you around. But try and keep positive, there must be a light at the end of the tunnel soon.

Judith

Sanji! I feel for you I really do!

I've been trying to think of something to cheer you up a bit but
failed miserably I'm afraid

I hope, as I'm sure that you do, that all this has a positive
outcome, they find out all your problems,and are able to treat/manage
them satisfactorily.

And that, very soon, you'll be pain-free and able to laugh about it all.

Have you been given a reason what was causing the intense pain when they tried the procedure

From the doctor- absolutely ziltch - he sheepishly stood at the bottom of the bed and said he only got 4 inches inside my intestines, and he looked bemused that I should experience such intense pain because he hadn't reached the first junction.
Then he made the mistake of mentioning another MRI scan, and after I told him I'd had one 5 days earlier - he said "oh, you've had one" - then he turned towards the nurse stood next to him whilst saying he would request a barium enema....then he disappeared.

On my last out- patients appointment, which would be 6 weeks ago now, I was given a card with the phone number of a dedicated Crohn's nurse, and until I started losing my hair, I hadn't had any contact with her.
If I hadn't phoned her the next morning after the colonoscopy - having been up half the night with the pain - and she hadn't run around the hospital like a blue ar$£ fly for me that morning - I would still be in the system and sat here waiting for an appointment for the barium enema.

Unofficially and without committing herself, she suggested that I may have a stricture (hence why the barium enema would be requested) and when they put air into your bowel to inflate it, the air may have got trapped and unable to move anywhere from behind a stricture and that is very painful.

When the 'boss' of the department came to see me, she gave the impression by the look on her face, that she wasn't very happy with the sized scope he'd used, and when I told her that he wasn't coming anywhere near me again - she said that she would do the next procedure because she is trained to use a finer scope/probe.
She said, when the next appointment comes through, if it doesn't have my name on it, give the department a ring and I will make sure it's changed.

As far as I'm concerned, there isn't going to be a next time, no way José - unless I'm fully anaesthetised under a general anaesthetic. I would regard myself has having an average pain threshold, but the pain I experienced during this procedure, took it right off the scale.

I'm assuming that none of them knew that I had diverticulitis (I didn't until I had the barium enema) and if you've got inflamed and infected diverticuli, which are like bulging pouches in your large bowel that trap food and bacteria (and then become inflamed/infected) - and you expand them with air, like over inflating a balloon, then it's going to hurt.

I was never given the option of having a general anaesthetic and to be honest, I was more worried about the throat job because I've got a strong gag reflex - I felt relaxed and had no qualms about the colonoscopy, and I was interested to watch this on the screen, so whilst I expected some mild discomfort, it never crossed my mind that it would be so painful. I had the standard 3 mg of Midazolam for sedation.

The nurses were lovely and very professional, but unfortunately it's all about saving money - whilst having a general anaesthetic holds risks - it's cheaper and quicker this way than having a theatre occupied, engaging an anaesthetist, doctors and nurses.
On one of the sites I have visited, someone described it as barbaric torture - Prior to the procedure, I thought those words were a bit exaggerated and extreme - now after the event, I think for some people those words describe it quite correctly.

I know I will eventually get there - it's just bloody depressing, stressful, painful and frustrating on the way to the end of the tunnel - on the way your life just seems to revolve around hospitals, doctors, blood tests... more blood tests, diets, pain and more examinations.
Dave has been one in a million, but even he turned around and said " how many more tests do they need to do before they actually do something" - by that he meant prescribing medicines.

Judith
Whatever you had your tests for - I hope you had a positive outcome.

Sanji x

Thanks Sanji, not really a positive outcome as I still have moderate pain/discomfort but operation did take care of one problem.

I do know to an extent how you feel, the frustration of endless tests with no end in sight. It's a different health system where I live and I started to think medics were running tests just so that they could claim back money from my insurance company, with me being the guinea pig.

Still you will get eventually get there, hopefully soon, and you will be able to resume normal life and start enjoying your visits to Spain once again.

rennie wrote:

Sanji! I feel for you I really do!

I've been trying to think of something to cheer you up a bit but
failed miserably I'm afraid

I hope, as I'm sure that you do, that all this has a positive
outcome, they find out all your problems,and are able to treat/manage
them satisfactorily.

And that, very soon, you'll be pain-free and able to laugh about it all. :)

Thanks Rennie
I will always think of you, every time I get the camcorder out - you did make me chuckle when I was in hospital, and if I'd been well enough, I would have filmed the atrocious hospital food
Sanji x

Update.
I got the results today of all my tests, apart from the colonoscopy due to it being abandoned during the procedure.

There's good news and bad news.
First the good news - the latest test results - apart from being deficient in Vitamin D, which can be supplemented by taking tablets or (imo) a better idea is to take a long holiday somewhere sunny, all the other tests came back within the normal range,

This was good news and especially the thyroid test - they needed to rule it out because I had similar symptoms experienced by those with an underactive thyroid. i.e.: feeling cold, hair loss, lethargy & a dry skin.

The bad news - I've got diverticulitis in my large bowel in both the ascending & descending colon, and whilst it's common in the western world to have this because of our diet - for some people it causes problems - whilst others can live all their life without knowing that they have it, unfortunately, it becomes more problematic when combined with Cohn's disease.

The pain I have in my right side is because the MRI scan found another stricture near to the site of the operation I had 6 months ago (ileum)
The medical team are going to have the big pow-wow at the end of this month and have my surgeon involved again, and it looks like another operation is needed.
They asked me how I felt about that, and tbh I felt nothing because I was completely taken aback at this news.

Now, a few hours later, the possibility of more major bowel surgery is worrying me, but at this stage I have to leave the decision to the surgeon, and whether or not he thinks that it's bad enough to operate and remove it, sooner, rather than later....it won't get any better that's for sure, but how long it will take before it causes me big problems to be admitted as an emergency, is like asking how long is a piece of string.

I've now got another problem if they want to operate sooner, rather than later - I booked 2 holidays last year BEFORE I became ill last November - the 1st one is in 6 weeks time (1st July) and the 2nd one is the beginning of September - this only leaves a 2 week window to operate (after the 1st holiday and before the 2nd holiday) to give me the 6 weeks recommended time after bowel surgery before flying again.

We went away in March to do a dummy run (same hotel) and during the week even though I was very careful of what I ate, I had a couple of nights being sick in the early hours - The benefits of the change of scenery, the sunshine and strolling on the promenade far outweighed the 2 nights of being sick.

I'm really looking forward to my holiday, I'm counting down the weeks and I don't think I've ever longed for a holiday so much - and whilst having Crohn's has curtailed where I now go on holiday, I've hung onto the idea that if the Crohn's was put under control with the aid of drugs or I take certain drugs like steroids with me, it shouldn't affect me doing what I love best - visiting Spain.

Sanji x

Well at least they're doing something I suppose!

I hope you get your holidays

Poor thing.
How does affect your insurance?
If you have to postpone then perhaps you could rebook for 6 weeks later. It would still give you something to look forward to.

And here I am feeling sorry for myself. Sanji, what you've been through is enough to make the strongest of us weep and I can only hope and pray that you find the strength to cope with everything that has and is being thrown at you. Hope you can make your holiday: a little sun will work wonders.

How am I doing? Well, I tried weaning myself off the tablets but failed miserably and am now back on 2 a day. Results are still patchy with some days better than others, but at least I'm able to get out and about. We've booked a 2 weeks cruise to Iceland/Norway in June and am determined that it will be 14 pain-free days. I have a feeling a lot of my problem is now in the mind, so if I can keep myself busy I should be okay.

Re the colonoscopy; I had one and as you say, the stuff you have to drink is quite simply disgusting. I'm not a great drinker (unless it comes with tonic water or coke!) so I was more worried about drinking the volume necessary rather than the procedure, but I managed. The whole thing actually went ok, until the very end when apparently my blood pressure dropped and they had to give me a whiff of oxygen. Once I was back in the side ward they offered me a tuna sandwich which I accepted gratefully and then promptly sicked the lot back up. They weren't impressed, but then neither was I with the sandwich!!!

Anyway, keep smiling if you can and focus on the positives. We are all rooting for you.

So sorry to hear your news Sanji. I'm glad the Thyroid test went well though.

Am thinking of you and am always here for you

Sorry, just catching up, I wasn't ignoring you Babs, if I'm not around, then you know I haven't been too well.

Re the colonoscopy; I had one and as you say, the stuff you have to drink is quite simply disgusting. I'm not a great drinker (unless it comes with tonic water or coke!) so I was more worried about drinking the volume necessary rather than the procedure

That's me too - I don't drink enough water. I can drink tea until it comes out of my ears, but I don't actually drink plain water and I struggle with a small bottle in Spain, so when I looked at a litre of this stuff, (and another 3 litres to follow) I didn't think I could get through it, and that's apart from it tasting horrible.

We've booked a 2 weeks cruise to Iceland/Norway in June and am determined that it will be 14 pain-free days.

Wishing you well and I hope you have a lovely pain free holiday - keep taking the tablets though.

I have a feeling a lot of my problem is now in the mind, so if I can keep myself busy I should be okay.

Psychologically it wears you down, there's no doubt about that, and the longer it goes on, there are only so many times you can convince yourself to 'snap out of it'.

In the past, things like illness never fazed me - I've been known to go to work 'dying' on my feet and walk knee deep in snow, rather than let people & patients down.
So to have this thing (Crohn's) grind me down, I think it's because every time I've had an appointment at the hospital, I've hinged all my hopes on the idea that they (medics) would sort the medicines out, and I'd be free of a lot of the symptoms and be able to move on.

It just hasn't worked out that way and now I'm sat in limbo again, being unable to plan anything and waiting for the medics decision after tomorrow's meeting.
I have had a lot of things on my mind, I wasn't expecting the 'bombshell' that they dropped about the possibility of needing another operation - that came totally out of the blue and it really doesn't sink into your head until later, and what it may mean.

I was very lucky during the last operation, and it was down to the skill of the surgeon being able to shuffle things around, which avoided me having a stoma and bag - they'd already marked off the spot with marker pen on my tummy, where it was going to be situated.
I doubt I will be so lucky the next time.

The pain I have in my right side which has plagued me throughout all this - Some days it's really sharp and other days it's gnawing at me every minute of the day and night, it indicates that something is not right inside my guts . Although I detest the idea, because between us both we have paid enough into the system and taken very little out in the previous years, we've now reached the point where we have discussed going private.

PS: Thanks Glynis, you've been a good friend.

Sanji x

Update.
Yesterday they had the meeting to decide what to do with me.
I've had a phone call from the Crohn's nurse and this is what they've decided.....

1. They are putting me on a PPI (Proton Pump Inhibitor) to cut down the amount of acid made in my stomach, which hopefully should stop the indigestion and the reflux seeping back up through the hiatus hernia..

They are trying a different PPI because when I took Lansoprazole in the hospital, it made everything I had to eat or drink taste 'funny' - and it's probably the reason why I didn't eat much while I was on it - it's a bit hard to explain, but everything seemed to have acquired a strong scented taste, a bit like washing-up liquid on cups if you haven't rinsed them well after washing up.

2. They are putting me on Vitamin D and calcium tabs - my Vitamin D level is extremely low.

3. They're putting me on a steroid that is designed to specifically target the inflamed area - and I must carry the blue steroid card with me at all times.

4. They are organising another colonoscopy under a general anaesthetic because they think it is important to get a look inside and see what's happening and to take several biopsies.

5. I've got to go back to the hospital for yet another blood test on Monday and pick up the medicines.

6. If this doesn't improve my condition and depending on the results of the biopsies, the next step they will take, is another operation.

OMG: All that Kleen - prep stuff again. ... I've just told Dave to get the lemons in the house when the appointment comes through.!!!

I don't know the name of the drugs at this stage, apart from knowing the PPI won't be Lansoprazole - there are a number of alternatives available and a specific named drug will be decided later today, after a conversation has taken place between a Consultant from the Gastro team and the Crohn's nurse.

I can't tell you how much I'm relieved that I finally seem to be getting somewhere with all this, and if it works I'll be over the moon. I'll probably feel a million times better if this bluudy pain eases off, And finally at long last I (they) now have a plan.
If they hadn't come to a decision yesterday, I (we) had discussed that I was not going to be left in limbo again, to sink into another depressive mood. We had both agreed to pay for a private consultation with a Consultant - My money would determine his/her time.

I must mention at this point, that whilst I've not been impressed with the general after-care. The Crohn's nurse as been blinking brilliant since I made contact with her. She's kept me informed, she's returned my calls when I've had to leave a message and she ran around the hospital organising the barium enema for me.

I'm absolutely convinced that by the response I've had from the Crohn's nurse, that I have been lost in the system and if it hadn't been for her bringing my case to the attention of the other medics, I would still be somewhere at the bottom of the 'lost' pile .

Sanji x

Sanji

Some light at the end of the tunnel finally.

I don't envy you drinking that vile stuff once more but needs must.

Wishing you all the best.

Judith

Just thought I'd share this - my youngest in Hong Kong sent me these a few days ago, for no other reason except to cheer me up.

Thanks Judith

No, I'm not looking forward to all that Kleen- prep again, but as you say, it has to be done,
I've no idea how long I'll have to wait for the Colonoscopy, I just hope it won't be too long and it would be nice if I can get all this behind me before I (hopefully) go on holiday in a months time. Some Spanish sunshine should boost up my Vit D levels too.

I think maybe it's been a depressive saga for some to read in here, but I'd just like to say that there is a FB page for Crohn's and UC - I've made one post on it myself, in response to some survey they were doing regarding the age you were, when first diagnosed, but I do look in and read most days.

There was a first time post by a lady a few days ago - poor woman she was beside herself.
I read her post and apart from (me) not having mouth ulcers ( phew) - Her post was like a ghost of what I would have written. i.e: Same points only without the text speak !
EG: Dry itching skin, pain, fatigue, haemorrhoids (due to being constipated), soreness and pain around her anus , HAIR LOSS, bloating that makes her look pregnant . etc , etc. ------ and she was praying they'd do the camera jobs quickly.

She was told it was urgent and then she got a letter to say it was cancelled with no date rearranged - she's frightened of what might lay ahead. I don't know her location, but I think she may be in Ireland or NI.

She goes on to apologise for moaning, but she just had to let it all out. ( a bit like me. lol)
For those who go on FB, you can read it yourself - under the entry of 28th May, her name is Debby Kxxxx.

Poor lass - I feel for her.

https://www.facebook.com/CrohnsColitisAwareness?fref=nf

Sanji x

I know really it's inappropriate but I feel like hearing that, at last, you are getting some help with your symptoms Sanji.

What a relief it must be and I just hope and pray that the meds work quickly and things settle down. As long as you can have your holiday in comfort then they can sort anything else out when you're home and refreshed.

Am really pleased for you that help is hopefully nearby

Thanks Glynis
It's been a long time to get here, but finally we have a plan.

Sanji x

All digits crossed