# Got my wings



## Grumbletum

Well, it looks like I am a fully fledged Crohnie! 
I got the letter today for my follow-up appointment after the Barium meal and totally freaked because it says for the Diabetic Clinic!! Phoned the surgery and asked if it would be possible to see or talk to my GP who very kindly phoned me back.
Apparently the consultant who does the diabetic clinic also does the gastro stuff. She ( my GP ) read the barium test results for me and is sending me some 'homework' - stuff to read on diagnosis and management. The test results say there is a long stretch of the terminal ileum which is narrowed and shows 'cobblestoning' consistant with Crohn's. Also my bloods at the time showed signs of inflammation.
I have to go in for blood tests tomorrow and she's putting me on a mild dose of Pred cos my appointment is not til May 16th and my symptoms have been increasing.
So even though I suspected this would happen, I've had a bit of a cry - partly from relief that I've got the diagnosis and treatment can begin and partly because it IS Crohn's.
Now seems like a good time to say a big thank you to all of you who have supported with your kind thoughts and advice. Definite upside of all this has been finding you lot - couldn't ask for a nicer bunch of people.


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## Jennifer

Glad you finally got a diagnosis. I know its not a happy diagnosis but Crohn's IS treatable! So there is an up side.


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## Crohn's 35

congrats, I think :yfaint: lol.  I have cobblestoning too, keeping the flares down as much as possible so the scar tissue doesnt build up and cause narrowing.  My biggest fear is obstructions.  Glad you finally got answers!


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## Cat-a-Tonic

Congrats Grumbletum!  So happy for you that you finally have a diagnosis!  (And admittedly, yes, a little jealous, as I am still in undiagnosed limbo.)  No offense but I'm going to have to revoke your membership card to the Undiagnosed Club!  Ha ha.    Seriously though, I'm sure it's a relief in a lot of ways for you to finally be able to get some proper treatment and to know for sure what's going on in there.  I hope the pred gets things under control until you can get on some long-term treatment.


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## Grumbletum

Thanks, folks :ysmile: *Pen*, that's what I'm worried about too - that the narrowing will mean I have to have surgery. But I'll cross that bridge, if necessary, when I come to it.
*Cat* you know I will be with all you lot in the Undiagnosed Club in spirit. I appreciate that I've been lucky in having a relatively short journey to diagnosis. Here's hoping that journey's end is in sight for you and the others. :hug:


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## Cat-a-Tonic

Grumble:  When you say it was a relatively short journey, how long did it take for you to get diagnosed?  I've been ill for a year and a half now so it seems like it's been a long wait for me, although I know that there are others that have waited much longer, so I've just got to be patient and keep at it.


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## Grumbletum

Cat, I first went to the doctor 8 months ago. I was getting recurrent UTIs at the time along with the stomach pains so was treated for them and suspected grumbling appendix with antibiotics until December until I saw the GP I'm seeing now and she suspected that there was another underlying problem and sent me for an ultrasound. That's when the bowel narrowing first showed up.
It has felt like a long 8 months - being treated, not getting better and waiting for hospital appointments. There are several GPs at our surgery, but she's the only one I will go to see now. I feel like she's really fighting my corner for me.
It seems that it can be a very elusive disease sometimes. Yes, I guess you need to keep plugging away and see if you can find someone like her who is going to explore all possible avenues for you.


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## tiloah

Sorry to hear it's Crohn's, but glad to hear you have a diagnosis. Hope they get you on a good regimen that works for you.


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## Astra

Is congratulations in order?
I know it's Crohn's but at least you now know and how to deal with it, cos you've been here with us! 
Good luck with the Pred, hope it gives you some relief for a while.
xxxx


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## Cat-a-Tonic

Grumble:  I get recurrent UTIs too!  That all started about 10 years ago, after I had 6 or 8 in one year I discovered cranberry supplements and now I have maybe one every two years or so.  Oh, and I do have a very good GP and a good GI - they just honestly haven't managed to find any evidence of bowel illness in me, yet.  C-scope and endoscopy, both with biopsies, CT scan, pill cam, many blood & stool tests - all clear.  At least that means we've ruled a couple things out, including Addison's and Celiac.  The only things the tests found is that I have low sodium, my CRP is a little high, I have mild arthritis in my hip, I have acid reflux, and I have some benign nodules on my liver.  And I respond to pred and Entocort - I've been told that if this is IBS, I wouldn't respond to those, so I know I've got something autoimmune and it's probably an IBD, but I'm still missing that one last puzzle piece, you know?  Everything else has fallen into place except for the most important piece!  But I'll get there, hopefully soon.  My GI wanted to give me a break from testing and from symptoms for awhile, so I've been on Entocort since October.  He's taking me off of it in May (I think) so that we can start up with more testing again.  He's mentioned SBFT and MRI - enterography, so hopefully one of those will show something.  Anyway, I'm rambling on, but congratulations again!  I hope to join the "Newly Diagnosed Club" soon.


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## ameslouise

Talked about mixed emotions - relieved to have a dx, sad because it's Crohns!

I do hope now that you have a dx, you can get the proper treatment and start feeling better!

Hang in there and keep crying if you need to - it took me three months to even say the word Crohn's without crying!

- Amy


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## Grumbletum

Just been for the bloods and picked up my tablets. :eek2: Eeeek, the Pred is a bit scary! My GP, God bless her, has printed me off some information including a diagram where she's marked where the affected bits are and highlighted possible treatment options with notes saying why.


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## Grumbletum

*Post diagnosis journey begins*

Well, have been doing pretty well on the Pred. It was so strange at first to be almost pain free after 8 months. I still get some pain on my right side and bladder issues, but not as severe as before.
Saw the GI today. He's sending me for a CT scan to find out what the connection is between the inflammation and the pee pee problems! Barium test didn't show up a fistula.
Meanwhile he wants me to go on Mesalamine and something beginning with A which I've forgotten now ( damn Pred head  but up the Pred dose again if the pain flares again.
Slowly, slowly catchee Crohns Monkey...


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## Cat-a-Tonic

Hey Grumble, thanks for the update and glad you're doing somewhat better.  I hope you figure out the bladder issues - I am prone to frequent UTIs so I often wonder if there's a connection between my gut and bladder issues as well.

The thing you're going on that starts with A, is it Amimtriptyline?  I've been on that for awhile, since Oct '10, and it works okay for me.  It controlled my headaches (I got chronic headaches as a side effect of Entocort, which I'm no longer on) and it helps me sleep at night.  It supposedly calms the guts too but I haven't noticed any change there.  I hope that whatever "A" medicine you're on that it works well for you!


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## beth

Azathioprine, possibly.


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## 25times

I think you guys might be on to something, with the recurring UTI's and crohn's. I dealt with horrible bladder issues for about two years straight. My UTI's were so bad that my pee looked like tomato juice =(
I also had problems with yeast infections. Now that I think back on it, I was getting the UTI's while I was flaring. The stomach and back pain I was getting from the crohn's looked and felt alot like pain from a UTI.
Interesting..


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## Grumbletum

Yep, Beth, it was Aza something. I think he said an anti-inflammatory, not a steroid. I really need to write things down in my current seive brain state. I see my GP next week for the prescription.
Samantha, how are you now? Did your UTIs clear when your flares died down?


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## 25times

Actually, it was the opposite. I'm in the midst of a really bad flare, and I have been since mid-February. I haven't a UTI since last October. And that one turned into a kidney infection that put me in the hospital for a week. But I definitely had some crohn's symptoms at the same time. I haven't had any bladder problems since then, luckily. But they were replaced with bowel issues. Also, I rarely took antibiotics for the UTI's. I completely believe that frequent use of antibiotics results in antibiotic-resistant bacteria. Which can make you much, much sicker. I let them clear up on their own, unless they get worse and migrate towards the kidneys.


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## Grumbletum

I know what you mean about the antibiotics. I must have had about 6 courses of them between Sept and Dec last year, the first lot being cos the GP I saw then thought I had a grumbling appendix. I tried loads of water, cranberry juice etc but couldn't get it to clear up. Doesn't help now that I've developed an intolerance for fruit juices - they set the pain off really badly.
This disease never ceases to amaze. I've still got bladder frequency and urgency, but not as severe as before I went on the Pred. But when the doc was pressing my tummy on the right side the other day, I got shooting pains down into my bladder area. That wasn't happening in previous tummy inspections when the UTIs were really bad :confused2:
It reminds me of those 'bash the alien games' you get at amusement arcades. You think you think you've knocked one problem on the head, and another one pops up.
Bloody Crohn's! Sorry to hear you are flaring. Take it easy and hope you see some improvement really soon.
Helen x


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## Grumbletum

*CT scan tomorrow*

And, silly I know, but I feel a wee bit nervous. Supposed to drink the contrast stuff at 10.30 when I'll be on the plane. Only a 20 min flight so guess I will swig it down before or after.
Maybe after if it's the one that makes you feel you've peed your pants!!!


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## Crohn's Mom

If I'm not mistaken...it's the radioactive iodine that they inject that makes you feel like you've peed your pants :lol: 
Maybe that will help you decide when you want to drink the lovely contrast! :rof:

Best of luck on your CT scan!


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## Grumbletum

Ah, thank you Tracy :- ) you've put my mind at rest!
Helen x


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## Grumbletum

*Flight cancelled!!*

Argh! And at the last minute too, so I'd drunk the bloody Gastrograffin before getting on the plane. Argh! Rebooked for next Tuesday.


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## vickie_x

Awww, that sucks! Especially as you'd already suffered the taste of the Gastrografin too - if I see that stuff again it'll be too soon. Best of luck for next tuesday though  x


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## Grumbletum

Thanks, Vicki. I am waiting til I am actually on the plane next week. Found this stuff a wee bit easier to chug than Barium - ewwwwww ...


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## Grumbletum

*Done and dusted!*

And it wasn't too bad! More yukky stuff to drink on arrival AND the injection which the nurse couldn't get to work in one arm so had to have it again in the other. Very weird sensation as it goes in - like warm, tingly wave moving down your body.
Hope that's it for tests for a while. I think I've had more needles and popped more pills in the last few months than I had in the whole of my life before!
P.S. I'm tacking on updates to this thread so anyone with similar ( i.e Crohns related bladder issues )can compare notes


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## lookame

I'm glad your getting treatment before you got bad. I also had a good cry when I found I had crohns. When I found I had UC(or thought it was UC) I was in a much better state, probably cause I thought UC was somewhat curable but when the blood results came back crohns I shut down, cried, fought with my fiance and then came to somewhat acceptance. I'm also newly diagnosed as of aug last yr but I suffered the entire year before that going to doctors and the ER without much of a glance...so I'm glad you didnt have to go through that. good luck


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## Crohn's Mom

So glad the test wasn't too hard on you! 

I don't know much at all about Crohn's related bladder issues so I will be very interested in reading your updates.


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## Grumbletum

*Starting to recognise the signs*

Spent the day yesterday with my stall at our local Market. Not exactly stressful, but I was wiped out when I came home, the arthritis in my hands is flaring up and I've got ulcers in my mouth for the first time.
Sure enough, got the tummy pains and the UTI symptoms today. Hopefully, it's just a minor setback. Does seem to happen often at the weekends, so I'm thinking tiredness must be a trigger.


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## Jennifer

Fatigue puts unneeded stress on the body so I wouldn't completely rule it out. I hope your symptoms subside and that you're well soon.


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## Grumbletum

*Oh b*gg*ry bollocks! :-(*

Forgive me for cussin', but it helps a bit!
Got a letter to see the GI again next month, but also the GP's surgery phoned me to come and see my lovely Dr Dawson who's been liaising with him. He phoned her and asked her to see me re: the CT results and new management plan.
I've still got a lot of active Crohn's in the ileum and I've got an abcess and I've got a small bladder to bowel fistula :frown: So I've come away today with a small pharmacy in a bag! Pred upped again, Mesren upped and antibiotics for the two surprise nasties. They did screening bloods as well, for Aza and MAB therapy should the current meds not do the trick.
So a bit gutted ( pun intended ) as I've been feeling an awful lot better, but Dr D says that's cos the Pred is probably masking some symptoms. But hey, I am still standing unlike some other poor folks and feeling a bit calmer after this little vent


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## tiloah

Awh I'm sorry to hear your results. I hope they get that under control quickly.


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## AndiGirl

I'm sorry that you have Crohn's but I'm sure you are relieved to have a diagnosis.  Hugs to you!


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## Grumbletum

Thanks ladies :hug: Took the last of the antibiotics yesterday, so will see what happens now. I think they've helped a bit. My pee pee looks a bit more normal : not quite so fizzy and cloudy ( gas from the fistula ) and I'm not having to go so much and so urgently. Fingers crossed.
Diesandhur, how are you doing? Are you still in the hospital? Hope you're recovering quickly and well.


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## littlemissh

Hope things are settling in there Helen, are you having more scans to see if the fistula etc are settling?


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## Grumbletum

Littlemiss, I have a GI appointment on 17th July so guess I will find out then what's next


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## littlemissh

Let's hope you stay well until then and get good news ! Seems a long time to wait when you've got disguise going on though. I guess if there was a problem before then he'd see you sooner as he seems on the ball, as does your GP!


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## Grumbletum

Yes, they seem to be working in conjunction which is great  The specialists here generally come from another island hospital or the mainland so a month or two's wait is normal. Could be worse: I've read some people have waited a year to see a GI.


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## littlemissh

disguise...grr...predictive text. How can fistulas become disguise??  )


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## Grumbletum

[SPECIAL][/SPECIAL]Lol!! I've got my Pred head on and thought  'disguise' was referring to masked symptoms. DOH! X


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## Grumbletum

Hmmm. Don't think the antibiotics have worked :-( Or might be cos there's still inflammation in the area. Still a fair bit of pain, despite upping the Pred and a lot of lower back and joint pain. Feeling a wee bit down. Coming up to a year since this all started and I was so relieved to get a diagnosis and hopefully feel better. Just seems like blooming disease is fighting everything we're throwing at it.
Right, Helen. Moan OVER!!!


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## Grumbletum

*What a difference a couple of days makes*

 Well, at the risk of tempting fate, I woke up a couple of days ago and just felt different - better. Almost no pain and the pee pee urgency has definitely eased off a bit, though is not yet normal. Mind you, it's been so long since normal that I've forgotten what it was like.
Starting my Pred taper again today. GP suggested reducing by 10mg every two weeks, but I'm going to try a more gentle wean at 5 every week and see how it goes. I've got a touch of the moon face, and have put on a little bit of weight ( which I was needing to ) but otherwise, nothing too drastic so far.
When I found out the Crohn's was really active despite being on the SCD diet etc, I had a bit of a rebellion and started eating things I had been avoiding. But they do definitely aggravate the symptoms, so I am back on the straight and narrow again food wise.
I have an appointment to see a dietician at the end of the month as I'm a bit concerned about my carb intake and the fact that I can't tolerate red meat, so I've to keep a food diary a week before I see her.
Two people in the last two days have commented on the fact that I am looking better, and that's despite the fact that I've been working a lot of overtime in the last two weeks :yoshijumpjoy:
Today I'm gonna clean the 'booroch' ( mess ) that is my house, do a bit of gardening cos it's warm and sunny here in the Hebrides today and take a time out to watch the Wimbledon Men's Final.
Have a lovely Sunday, all :ghug:


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## Dexky

Helen, I hope you can leave the roller coaster and just stay on this plateau for a good, long while!!  Enjoy your good days but try not to overdo it


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## littlemissh

Hope things carry on in the right direction, and that soon you can eat more of what you want. Your gastro appt is soon as well isn't it, lets hope that goes well too!


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## Grumbletum

*Starting Imuran ( Azathioprine ) on Wednesday*

Another call from my GP today to say that my blood tests were fine so I've to start on Aza at the same time as tapering the Pred. Must of got my wires crossed - I thought it would be Aza if the higher steroid wasn't working.
She wants me to start on the lowest dose possible and work my way up. Off to join the club!


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## littlemissh

It's not so bad a club to be in! I had a slow increase in dose , starting at 25mg and working up. No real side effects , though now having an issue with persistently low White count since my dose increase recently. The dose increase is making me feel better but my bone marrow is objecting!Bit anxious what will be next if my counts don't increase at my next blood count. I don't think that this is a common problem though. Aza has been great for me so far.


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## Grumbletum

Sorry to hear that, Littlemiss. I think I've seen a few folks here mention blood count problems. Have they suggested a plan B? Hoping it won't come to that x


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## littlemissh

Hi, I am really hoping things will improve with my wcc as I have a feeling that humira/remicaide will be next which I want to keep for the future. Its so frustarting as I seem better GI wise with the increase dose.

Unfortunately today I have developed a cellulitis in my leg...probably from scratching myself on my childrens guinea pig run. It seemed fine for 2 days but today it has suddenly become red, swollen, sore and my temp 39...again. Give me a break I say. Luckily my gp has given me a big dose of antibiotic and will see me in the morning and also recheck my bloods etc.
If any worse before then ,or no better I will have to go in....which I absolutely don't want if poss...he got the point! Though to be honest the way I feel right now, I am starting not to care if it gets sorted quicker....blooming guinea pigs.


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## Grumbletum

Ohhhhhh no!! Goodness, I hope you are OK. I start my Aza today. I do cleaning work and am forever getting bumps and scratches, but they provide us with gloves and I've bought some of those little bottles of hand sanitizer, so fingers crossed.
We seem to be on very similar management plans and last time I saw the GI, he mentioned Humira if the Aza doesn't work. That was before the CT results, so I guess it might have changed when I see him again.
Hope you're resting up and have someone else that can clean out the guinea pigs!! :hug:


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## littlemissh

Thanks. Its my daughters yr 6 leaving play today but am gutted because I just feel shitty and can hardly walk. She is reaaly upset, but they are getting used to their liability of a mother. Just told them   i hurt my leg.
I am lying on sofa being a lazy wench, watching my temp creep up...now 39.4. I have given myself a figure of 40 at which I shall have to do something..


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## Grumbletum

Oh no, and it's so hard to explain things like that to the wee ones :-( This flippin - for want of a stronger word - disease has so many repercussions. Yep, I would say 40 is definitely time to make that call. Will be thinking of you x


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## littlemissh

Ended up being admitted and hooked up to iv's. Am going to be a few days. Once my leg is responding to the meds they will 'release' me.
Hope you are ok with your aza.


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## margie

I am glad that you finally have your diagnosis, but like others have said it is treatable.  Hang in there and I will pray for a quick treatment for you now.

You will be in my thoughts and prayers.


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## Grumbletum

littlemissh said:


> Ended up being admitted and hooked up to iv's. Am going to be a few days. Once my leg is responding to the meds they will 'release' me.
> Hope you are ok with your aza.


Aw, I know you didn't want to be admitted, but it sounds like the infection is quite bad with your temperature that high and the fact that they want to keep you in for a wee while. Take care, hun, and hope you are feeling better and outta there after not too long  :hug:


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## littlemissh

Going to theatre in 2 hours, may have to have part of my lower leg removed as they think it may be necrotising fasciitis...frightened...
May be a while before I repost, hopefully still with all my leg.


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## tiloah

Is it exploratory? How frightening. I hope you get to keep your leg. Will be thinking of you.


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## Grumbletum

Omg, how the hell did that happen? Jeez, you must be in shock. I am.  Hoping and praying it won't come to that. Post when you can Hun. Xxxxx


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## littlemissh

I am back from surgery, was only in for 2 hours and for some reason really awake at the moment. It was early necrotising fasciitis...frightening when they pit me to sleep in the main theatre to reduce spread of the infection to the unit. I am so 'lucky' they found it early..visible gas on X-ray of the leg as it got so much worse so quickly ..the medical consultant and then the orthopods who saw me and got me to theatre in 5 hours of being calked. They have had to remove minimal calf, buthave had to leave the operative site open and I will go back to theatre in 3 days for further surgery and hopefully closure of the wound. The removed tissue has gone to the lab, if not too much necrosis then this means less likelihood of further removal of tissue in 3 days time.now on 4 different high dose iv antibiotics to reduce further tissue destruction.

I can't see what has been done and this open wound as I am all wrapped up in an enormous wadding and bandage thing. I am hoping the nurse will come by soon as I want ask how big the surgical opening is and if it will be enlarged in 3 days. 

Still can't believe 1. What has happened- was fine 48 hours ago...was so quick
                         2. That I am so awake and typing this 2 hours post surgery..lucky me to have good reaction to GA.
                         3. How lucky I am to have a team of doctors treating me who were so on the ball and quickly treated me.

Am hoping surgery in 3 days goes well and the silly amount of iv antibiotics minimises further tissue destruction.
Wondering what my leg looks like under all these bandages.

Thanks for your good thoughts guys..looks like they helped me this time
Am really hoping the surgery in 3 days time will be minimal and the silly amount
Also got away without a central line as I didn't have such an extensive removal and on general ward in an isolation room.


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## Grumbletum

Well, it sure is good to hear from you  what a whirlwind!! Thank God they acted so fast and hopefully you'll be up and about soon. How are the wee ones coping? You've all had such a fright. X


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## tiloah

My goodness! I am so glad to hear they didn't take your leg! I hope the antibiotics kick that bacteria's ass!

I'll keep my fingers crossed for you that you can avoid losing more tissue. Big hugs!


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## Grumbletum

4th day on the Aza, and I've been feeling really sick all day, but just been reading Kelly's Imuran thread and it seems to be a common side effect. I'm taking it late evening with something to eat. Had my stall at the Market today, came home at 4, went for a nap and woke up at
 9.30!

More concerning is a developing pain on my left side, very similar the pain on the right where I think the abscess is/was. I'm hoping it might just be things healing and moving around.  I'll ask the GI to have a poke at my tummy on 17th. Bladder issues are much, much improved.
Dexky, you are so right: this is a rollercoaster ride. STOP, I want to get of!!! Lol.


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## DustyKat

Hey Helen,

I hope the side effects of the Imuran settle for you soon...:hug:

Fab to hear the bladder has settled down! YAY! 

Good luck with your appointment hun, I have everything crossed that all goes well and the Imuran does the trick!...with no side effects! 

Thinking of you, :wub:
Dusty. xxxxxxxx


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## littlemissh

Sorry you are feeling sick. Some people find splitting the dose to breakfast and bedtime with food reduces the nausea


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## Grumbletum

Morning, how are you? It's such a tiny pill it would be hard to split! My body's probably just adjusting to it.


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## littlemissh

You can get pill cutters from most chemists but I just used my fingernail with my 50mg aza when I was on 75mg. It split really easily.
I'm doing ok, just put a little update on the other thread.


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## littlemissh

Helen, have you seen your gi. You said it was July 17th though that would have been Sunday...what did he say?


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## Grumbletum

Yea, it's today!! Hospital phoned me this morning to say his flight from Stornoway was cancelled cos of fog - thought it might be, cos the weather was awful here too. They've just phoned me again to see if I can go into the hospital here and talk to him by video link.
Better head off - thanks for remembering :hug:


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## DustyKat

Good luck mate!!!

:goodluck::goodluck:

Dusty. xxx


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## littlemissh

Let us know what happens.


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## Grumbletum

Well, that was fun! The video link was working, but not the sound, so I we ended up talking on the phone. He says I'm looking rounder! I certainly am: 5 kg rounder.
Basically he just confirmed the fistula and said, like you did Dusty, that if the current course of meds doesn't heal it, then I'll need surgery.
Have to stay on Pred til I get up to 100mg Aza. So let's hope the bladder behaves....and I don't get too much rounder!!


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## littlemissh

Better to be a little rounder than spaghetti like!


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## Grumbletum

Lol! Agreed. How are you doin? Any mention of home yet? x


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## DustyKat

Hey Helen, 

Rounder.....nice. :lol:

Do you know how much longer they will try the meds if there isn't significant improvement? Having said that I hope they do the trick! Fingers, toes and everything else crossed that it all settles and the thought of surgery becomes a distant memory! 

Good luck mate, :hug:
Dusty. xxxxxxxx


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## littlemissh

Not yet, maybe mid/end week. Missing my girls and hubby but they probably aren't missing nagging mum!


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## Grumbletum

He didn't say, Dusty, but wants to see me again next time he's over here again. Probably in a month or two. Is there a kind of standard period to determine if the meds are working or not?


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## DustyKat

I don't think there is a standard time, it would be up to your GI. I thought he may have said to you if things don't improve in X amount of time we need to move onto to the next level. Could you ring him and ask? Only if you want to of course! No need to satisfy my curiosity! :lol:

Dusty. xxx


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## Grumbletum

yea, he told me to ring him or my GP if I had any problems or questions. I guess you need to give the Aza some time to kick in?


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## DustyKat

It normally takes 3 months to become fully therapeutic. 

Dusty. xxx


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## Grumbletum

Letter today to see him again on 8th August. He did say he'd see me next time he was on this island. Will ask him how long to give the Aza etc: will be up to 100 mg Aza by then.


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## littlemissh

I was told 8 weeks to see much benefit and then it gradually gets working over the next 2-3 months. So early days. Some see benefit earlier, I think I noted it at about 5-6 weeks. Apparently if you are slimmer you get earlier benefit as the aza tends to be absorbed initially by the subcutaneous fat. 
It's good you have a soon appt to discuss queries with him.


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## Grumbletum

*Growing another fistula??*

Life in the Crohn's Garden, eh? What a bed of roses :rosette2:.................not!
Glad I'm seeing the GI again on Monday ( weather permitting! ) The niggly pain on the left, is now becoming a bit more persistant and similar to what was going on on the right: sort of bubbly 'festering' sort of pain, sometimes shooting down into my bladder.
I did mention it to him when we spoke last, but of course he couldn't feel my tum cos we were on different islands - lol. If this turns out to be another fistula, I think I am going to beg him for surgery. Time for them to get in there and tidy up, before the weeds start taking over!!!


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## littlemissh

Ah, Helen,
Sorry to hear your weed garden is misbehaving. 
How long have you been on aza?
The other option if it is weedus fistularis duo , is infliximab- very effective at treating fistulae and no knife. He will probably set out your options when he sees you. Could you have a short break over on the mainland to get investigations done, see gi etc all in one visit- it might be worth asking that also. 
It could drag on otherwise.


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## DustyKat

Oh hell Helen, I hope its not another fistula! :eek2:

Good luck with your appointment hun, I will be thinking about you and will have everything crossed! No more weeds...

:goodluck::goodluck::goodluck:

Sarah hasn't looked back since her surgery Helen and Matt has gone from strength to strength since his in April. 

Dusty. xxx


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## littlemissh

Dusty is right. There seem to be many people who struggle to gain remission and do amazingly well, very quickly with surgery.
You just need to know what all your options are and the chances of success and long term remission are with them all. Then you can decide!


----------



## Grumbletum

Thank you, petals :kiss: Dusty, is that Matt in your avatar? Great photo and he is looking well. Honestly, your kids are my inspiration and the reason why, if my GI does say surgery, I will say 'Bring it on!'  Littlemiss, I've been on the Aza for about a month now and up to the full doseage. Stil early days, I guess.
He's coming here this visit so I'll make sure I have a list of questions written down. Once I'd actually been diagnosed and assigned to his care, things moved a lot faster and I didn't have long to wait for the last CT scan appointment.
Littlemissh, how are you doing? Been following on Lulu's thread - I sure hope things can get back to some sort of normality for you soon.


----------



## littlemissh

I posted an update there, things up in the air again so waiting for decisions.
Will know more tomorrow.


----------



## DustyKat

Grumbletum said:


> Thank you, petals :kiss: Dusty, is that Matt in your avatar? Great photo and he is looking well. Honestly, your kids are my inspiration and the reason why, if my GI does say surgery, I will say 'Bring it on!'  Littlemiss, I've been on the Aza for about a month now and up to the full doseage. Stil early days, I guess.
> He's coming here this visit so I'll make sure I have a list of questions written down. Once I'd actually been diagnosed and assigned to his care, things moved a lot faster and I didn't have long to wait for the last CT scan appointment.
> Littlemissh, how are you doing? Been following on Lulu's thread - I sure hope things can get back to some sort of normality for you soon.


Yes, it is Matt! I have no idea about the crazy hat though! :lol: The photo was taken last weekend at a three day music festival he went to with Sarah. He is doing well hun and it is such a joy to see. He is 4 months post op now, has put on 10 kilos and I haven't seen him so happy or with so much energy in so very long. So much so that this weekend he will play his first game of soccer this season. To say I am happy would be an understatement, man I hope the good times last forever for them both.

I so hope things are settling for you hun and you are getting some peace and relief. No more weeds!!!

Much love, :Karl:
Dusty. xxxxxxxx


----------



## littlemissh

I want that hat!


----------



## DustyKat

littlemissh said:


> I want that hat!


You can have it!!! It looks like road kill. :lol:

Dusty. xxx


----------



## Grumbletum

*Surgery it is*

Yep, well GI thinks it's another fistula too and that the other one hasn't totally closed either, so he's referring me to a surgeon at the hospital in Inverness. Says the Crohn's in my small bowel is 'extensive and aggressive' and needs to be sorted out soon. He also told me that he'd already applied to the Health Board to get me on to Humira and is just waiting to here back from them.
Meantime, another 10 day course of Metro and Cipro ( WBC is still raised ) and carry on with the rest of the meds as is, including the dreaded Pred. 
This first flare's been a year now so if this is the way to sort it, then let it be


----------



## littlemissh

You have a plan and the plan looks good, well thought through and so hopefully you will soon be fixed !


----------



## DustyKat

So is it Humira you try next or surgery and then Humira? 

Sorry, I'm a wee bit confused hun! :confused2: :lol:

Dusty. :heart:


----------



## Grumbletum

:hug: My fault, m'dear. Surgery then Humira I think. Although he sounded like he might put me on it when he gets the approval. Guess I'd better double check :smile:


----------



## DustyKat

Thanks for that but I still reckon I'm the one with the problem, not you! :lol:

To be honest Helen, if you are anything like my kids then getting that crappy bit of bowel out may well be the best thing ever! :thumleft: 

Good luck mate, whichever way the road takes you...:hug:

Dusty. :heart:


----------



## Grumbletum

:hug: Thanks Dusty. I started thinking maybe he wanted to try the Humira before deciding on surgery, but I think that was the plan before this possible second fistula reared its ugly head. Didn't ask what the surgery might involve as I thought I'd just wait til I see the consultant.
It was funny. He said 'I'd like to put you this new med - it's an injection you do yourself' and I said 'Is it Humira' - he was well impressed! And he dictates his notes into a little recorder but he forgot the name for this type of fistula and I reminded him. He nearly fell off his chair!! He was quite curious to know how I knew all this stuff - it's all from here on the forum mainly 
It seems some folks, like Matt and Sarah, are on maintenance meds after surgery but some can come off their meds. Why is that please, oh Encyclopedia Australiaca? :lol:
P.S. Littlemiss, I was getting bad headaches on the higher dose of Aza, but split it like you suggested and it has really helped - thank you too :hug:
God, I love this place :heart::heart::heart:


----------



## DustyKat

Good for you! :thumleft:



> It seems some folks, like Matt and Sarah, are on maintenance meds after surgery but some can come off their meds. Why is that please, oh Encyclopedia Australiaca?


I think it depends on the doc more than anything. As a general rule it is the surgeon that says you don't need them because he/she has cured you with their outstanding surgical skills but it's the GI's who say if you don't take them it will rear it's ugly head at the first opportunity. It's not always the case though. 

You would well know that everyone is different and some people do go without meds for quite some years following surgery but in my kids case I err to caution. I guess when I saw what Sarah went through and how damn close we came to losing her that I'm scared witless of that ever happening again. Of course it never should happen now that she is diagnosed but it's a bloody hard thing to shake. 

I see the meds as the same as any prophylactic medication you take to keep a disease a bay, whether it be a puffer for asthma or an anticonvulsant for epilepsy. I still hate the thought of it but fear the consequences of not taking it far more. 

Thinking of you mate, :hug:
Dusty. xxxxxxxx


----------



## Grumbletum

*Bartholin's cyst? Fistula? Help :-(*

Ok, here comes the yukky bit. In the last couple of days I've noticed a slight discharge and a bit of discomfort, so I had a look today and I've got a smooth sort of lump in my vagina - looks like a wee ping pong ball.
I had a Google of course which is how I found the name of the cyst and there are a few posts on the forum.
I thought my new 'fistula feelings' were signs of another bladder one, but maybe it's vaginal? I think the treatment for the cyst is antibiotics anyway which I'm on for the next few days. But what do I do if the lump doesn't go?
I've got an appointment to see the GI again on 29th August - should I jus wait til then?
For some reason this is really upsetting me :frown: Just wonder what this bloody disease is going to throw at me next.


----------



## DustyKat

Oh hell Helen, just what you need! ugh. 

If you don't have any symptoms then I would probably wait but if you do, and I guess you do if you can feel something going on down there, then I would get it checked out sooner rather than later. I guess where you live means a gynaecologist wouldn't be easy to get to so maybe see your GP? At least he can confer with the GI if need be.

If you don't have symptoms often they just leave them but if you do and it has abscessed then it will need to be drained. 

Awww Helen, I'm not surprised your upset. Although I haven't been through it myself I felt the same way every time Matt had yet another set back, it just seemed never ending. (((HUGS))) to you hun...:hug::hug::hug:

Dusty. :heart:


----------



## Grumbletum

Thanks, Dusty xx What would I do without you?? Yea, our consultants come over from another island or the mainland. I just got a fright when I saw it. I'll keep an eye on it for now.


----------



## Dexky

Sorry Helen!  One more thing to add to your 'Anybody ever had?' list!  I hope you get it sorted soon!


----------



## littlemissh

Blimey grumbly, 
Let's hope you get fixed quick. If it is a simple bartholins cyst they are relatively easily fixed- drained and sort of turned inside out- called marsupialised ( always makes me think of kangaroos!!).
If it becomes more red and inflamed you should see your gp.
Won't be just as easy fixed if due to a fistula would mean remicaid +\- surgery.
Let us know how you get on.


----------



## Dexky

Hey Helen, have things improved on the antibiotics?


----------



## Grumbletum

Yes, Dexky, I think they have. :thumright: I had a pretty rough couple of days with stomach pains and D, which ironically I don't normally get, but things have improved. The 'lump' seems to have receded a bit too. Will still mention it to the gastro at the end of the month.
Thank you for asking :rosette2: How are you and how is the wee one doing?


----------



## Dexky

Glad it's getting better Helen!!

We're doing great  Thanks for asking!!


----------



## Grumbletum

*On the up track again?*

Jeez Louise - I hate rollercoasters - lol. They make me dizzy and uke_r:
However, I think I may be on an up again.
The lump has gone and so has most of my stomach pain :yoshijumpjoy: Still the odd twinge in the pelvic area, but my urine is now the still rather than sparkling variety and I'm not peeing every two seconds!
Saw the GI today, and he's pleased too. Thinks the fistulas may well be healing and that the inflammation is settling down at last. Looks like surgery is still on the cards and it will probably be a resection. Just waiting for the appointment with the surgeon which he thinks will be quite soon.
I started tapering the Pred 5mg a week but he wants me to take it a bit slower and do it every 2 weeks. The Mesren and Aza will be for the long term and he'll only put me on the Humira if the Aza doesn't work, which is fine by me.
Feel better than I have done for a long, long time - here's hoping it lasts


----------



## DustyKat

Woohoo, fab news Helen! anda:anda:anda:

Hmph...I don't like rollercoasters either...:voodoo:...been on them too much over the last 8 months. :lol:

I hope it lasts a very, very long time too hun. If it does come to you needing surgery it's good know that the healing that is taking place now should lead you to a more conservative resection. 

Dusty. :heart:


----------



## Grumbletum

*Eeeeeeeeeeek!*

A staff nurse from the hospital in Inverness just phoned me cos the surgeon's secretary had been trying to phone me today to make an appointment. I'm assuming that's for a consultation rather than going in for the op. Anyway, the secretary is going to call me back Monday morning.
Oh man, the butterflies in my tummy are so big, I am probably going get the sh......... oo:


----------



## leithcote

Grumbletum - sounds like you and I are following much the same path  I'm currently tapering off Pred after a recent flare-up (whilst on 75mg of Mercaptopurine!). I'm in the "interesting" position that my Clinician is quite keen for me to have a resection - whereas the Surgeon seems to think that there are more "drug" options, namely Humira. I have to admit I'm leaning strongly towards surgery, and getting rid of my dodgy, troublesome bit of ileum - I hope everything all goes well for you, if the 'op' is indeed on the cards. Best wishes, Tony.


----------



## DustyKat

:hang:  Helen! You're doing just fine hun...:hug:

Dusty. :heart:


----------



## Grumbletum

Thank you both :soledance:
That is an interesting position, Tony. If you decide on the surgery, will the surgeon agree to go ahead with it?  It's my GI who is saying he thinks I need the surgery, so wonder what the surgeon will say. When I saw GI a few weeks ago I was pretty rough, and was like 'bring on the surgery', but I think the Aza has kicked in and I've been better in the last couple of weeks than I have been since this all kicked off. But GI still thinks I need a resection, and I think deep down I agree. Things are better, but I can tell there is still stuff there lurking in the background so no surgery now might be putting off the inevitable?
But I'm such a wuss ( Dusty, I can't remember what the Ozzie for wuss is : whingeing pom?!! ) I visit people in hospital, and the nurses want to put me in a bed cos I turn so green ( phobia :frown
Maybe I could have some pre-op meds.............like, now? ale:


----------



## DustyKat

Awww Helen, I reckon there would be something wrong if you didn't have the heebie jeebies about having surgery! :hug:

Ahahaha Helen. Yeah whingeing pom...

I call my dad that and it really gets him going!.."I'm not a Pom, I'm a Scot!" 

My response..."Ah hell, there isn't even a fence between ya!" 

Dusty.


----------



## Grumbletum

Lol, Dusty, my rock :kiss: You better watch out, or he might give you a Glasgow kiss! Depends where in Scotland he comes from, of course. Give him my regards - he's got one helluva daughter :heart:


----------



## DustyKat

Aw shucks, thanks hun...:blush:

No Glasgow kisses here, thank goodness! He is from Edinburgh. 

Dusty.


----------



## Dexky

Grumbletum said:


> I visit people in hospital, and the nurses want to put me in a bed cos I turn so green


Me too Helen!!  I hate the places!  I get jitters if I know I'm going to have to get a shot!!  I couldn't imagine surgery jitters!  Maybe a little self-medicating is in order


----------



## Grumbletum

I confess! I have just swigged the best part of a bottle of red. And I ain't even got the appointment yet. Lol


----------



## leithcote

I think with a little arm-twisting I can convince my surgeon to go ahead - he did actually say that he thought I was a good candidate, but thought we should exhaust the drug options first, something I seem to be doing quite rapidly!  BTW, I'm not great with hospitals either, which is a shame as I've been in A&E quite a lot recently!


----------



## Grumbletum

*Here we go!*

Spoke to the secretary today and they want me in this week for an inpatient assessment. Eeeeeeeek! She said he wanted me over on Tuesday, but she persuaded him to make it Wednesday so I can get things organised.
I thought it was just going to be a chat with the surgeon, but she says I might be there 3 days depending what tests they have to do. Hah, I still have a lot to learn about the rules of this game. 
Guess I'd better go book my flight. Any advice on what the tests might be etc?
:sign0085:


----------



## DustyKat

I assume it is a pre op work up???

Three days is a long time for this though but as the secretary said it depends on what tests they want to run. Perhaps he will want to do scans and things to check on what is happening now which is normally done outside the pre op clinic, hence the extra time. 

Aside from that they do things like bloods, chest X-Ray, ECG, anaesthetics work up, observations and load of paperwork. If it isn't pre op work up then I have just told you a load of shite! :lol: 

Good luck hun and keep us posted! 

Dusty. xxx


----------



## Grumbletum

:ylol: Dusty, nothing you say is a pile of shite! Pearls of wisdom, m'dear, pearls of wisdom.
Yes, I think it must be a work up. She said to see if I'm OK for the surgery, which will be scheduled for a later date.


----------



## littlemissh

Good luck Helen !


----------



## Grumbletum

Thank you :rosette2: Would you know, it's blowing a gale today and foggy. Here's hoping it clears up for the flight tomorrow. I sort of don't want to go..........but I do too :yrolleyes:


----------



## Dexky

You may already be in the air but I hope it goes well Helen!  Good luck!


----------



## Grumbletum

Got here OK yesterday. So far, lots of forms, FBC and waiting to see the consultant this arvo. So won't make the flight home today.


----------



## DustyKat

Hope all goes well mate and you leave with solid answers! :hug::goodluck:

Dusty. :heart:


----------



## Grumbletum

Well, saw the surgeon and he thinks the Crohn's and fistula are not severe enough to require surgery. So he's ordered a CT scan and asked the GI consultant here to speak to me tomorrow. Said my bloods indicate that I'm not responding to the Aza and that Infliximab should maybe be the next step.
GI is not in tomorrow, so I have to stay here over the weekend :-(


----------



## Welsh-bird

Coming in here to gatecrash...
Sorry you have to stay the weekend Helen, but am so pleased you don't have to go under the knife! Hope the Infliximab works for you- everything crossed!
:hug: xx


----------



## Grumbletum

Thanks Welshy xx All a bit confusing as the docs here are telling me the opposite of the doc from Stornoway. Guess all will be revealed in time and I have to be patient - and I can learn a lot of patience from you, Andrea


----------



## littlemissh

Hi Helen,
It would be good if you avoid the knife and inflix seems to work well in a lot of peoples fistulae. I would wait for your Ct results though as they may change their minds again... You know what docs are like!!
Hope your weekend isn't too boring...lots of time to spend on the forum..assuming you have a good signal.
We could occupy you with jokes.
'what do you call a sheep with no legs?
A cloud !!'


----------



## Welsh-bird

LMAO at 'Patience' Helen! Its a virtue I think I'm missing, as St Dusty of Oz will so readily testify!!
Hope the weekend goes quickly and smoothly for you. Sending loads a love, and will be looking up some jokes to keep up with LilmissH ^^ xxx


----------



## Astra

Sorry Helen!
I'm always late to the party! My head's up me arse, don't know whether I'm coming or going!
It's good news you're not having surgery tho, hope you get the Infliximab! fingers and toes are crossed!
Chillax over the weekend luv and take care
xxxx


----------



## Grumbletum

:boring:I am planning to escape to the shops! We have hardly any on Uist,  so a little retail therapy is in order.
What do you call a man with a seagull on his head?
Cliff!


----------



## littlemissh

Happy shopping!
Where do antarctic wild boar live?
In a pigloo.


----------



## DustyKat

First up Helen...Welshy's middle name is *NOT* Patience! :ylol:

Okay, well I would tend to listen to a GI over a surgeon so it will be interesting to hear what he has to say. I don't think the severity of Crohns is indicative of the need for surgery but rather the fact you have a fistula and where that fistula originates from. If it is originating from your ileum I don't know that Remicade will cut the mustard. 

Matt's CD was only ever judged by biopsy to be mild to very mild, it was the fistula's that made the surgery necessary. He never fully responded to Pred or Imuran either while ever the fistula's were there and I would venture to say that these meds coupled with antibiotics kept things on an even keel at best. 

Hope I'm not scaring the poop out of you Helen! :eek2: I just want to tell you what our experience was. 

Sorry to hear you have stay on over the weekend...

Much love, :heart:
Dusty. xxxxxxxx


----------



## Grumbletum

Ya ain't scaring me Dusty xxx Not knowing is scarier. And I'd prepared myself mentally I guess for surgery. If it's inevitable, I'd rather have it done sooner. Interesting to see what GI will say.
They pissed me off cos they made me drop everything and come over this week and now I'm hanging around. But I'm not ranting cos nurses are lovely and it's not their fault.


----------



## Dexky

Grumbletum said:


> But I'm not ranting cos nurses are lovely and it's not their fault.


What a kiss-ass!!  I hope you enjoy your unintended holiday Helen!


----------



## DustyKat

Nurses are lovely, nothing kiss ass about that Dex. :tongue:

Dusty


----------



## Grumbletum

Still in Raigmore! Have seen the surgeon a couple of times, still waiting to see the GI. Mr D says it looks like the fistula has healed ( yayyyyyy ) and that the abscess near my bladder is much smaller. But a loop of my TI is 'all yukky and horrible.' hasn't healed at all this flare which is why they want to go with Remi. May even get the first infusion today.


----------



## Grumbletum

What do you call a man with a canine on his head?
Doug
And without?
Douglas


----------



## DustyKat

^^^^Ahahahaha....I don't think it works as well with an Aussie accent though! :lol:

Fab news about the fistula Helen! 

Sorry to hear about the TI though.  

I hope the Remi does the trick hun. How do feel about it? 

Dusty. xxx


----------



## Grumbletum

Tbh, I'm not sure, Dusty. I feel good - virtually no pain - but the surgeon says my bloods indicate the Aza is not working. He mentioned the white something count? Not WBC, something else. But I've only been on the Aza two months now.


----------



## DustyKat

White cell count is the only thing I can think of but that's the same as the WBC. 

Hmmm, I wonder what the GI will think? 

Good to know that you feel good though...YAY! 

Dusty. :heart:


----------



## Grumbletum

*Losing my colonoscopy virginity*

:ywow: Hah, how did I think I could avoid ever having one? Had a long chat with Mr Potts, the GI, who is very funny. Tum is still sore in pelvic area on palpitation, so he wants to go with Infliximab. Totally dissed the Mesren and says he might switch me to Metho-wotsit.
 So here til Weds for appropriate tests etc. Ho hum!


----------



## DustyKat

So you will finally get your introduction to the silver stallion! :eek2: 

:goodluck:.......with the tests Helen! 

Dusty. xxx


----------



## beth

you have seen Billy Connolly about colonoscopy haven't you?....  http://www.youtube.com/watch?v=BBMsPNI6EZE

So where do you, do you go to Raigmore, or Aberdeen?


----------



## Grumbletum

Omg, what the hell is the silver stallion???
Yes, Beth, and I was telling DS to look for it on YouTube. I'm in Raigmore for the first time. Previously been to Stornoway for tests.


----------



## DustyKat

Use your imagination Helen!!! :rof:


----------



## Dexky

That's great Dusty!!  Way to ease her pre-scope jitters!!!

Helen, will you be sedated??


----------



## DustyKat

:kissgrits: Dex. 

Dusty.


----------



## Grumbletum

Now now, you two rder:rder:
Yea, Mr D says Mr P will 'flatten' me!! They were going to do it tomorrow, then decided after brekkie for late morning today, but the Picolax hasn't got things moving yet, so late afternoon hopefully.


----------



## DustyKat

Sweet dreams Helen! 

Thinking of ya! 
Dusty. xxxxxxxx


----------



## Grumbletum

2 sachets of Picolax, gallons of water and plenty of cramps but no result, so they gave me an enema. Oh joy.....


----------



## littlemissh

Hope all has gone well with the scope.
Looks like methotrexate on might be on the cards for both of us. We may do the methotrexate journey together!


----------



## Grumbletum

Is that instead of the Aza, Littlemiss? And how is your leg now?
Well, the enema got things going but not enough and they started the scope but had to stop. Of course, the Pico kicked in as soon as they brought me back up to the ward. So they're gonna try again tomorrow morning.


----------



## littlemissh

Let's hope it's more successful tomorrow then.
Leg healed really well and physio reckons I may be able to drive in a couple weeks.

Reg methotrexate - yes instead of aza but am hoping can get back onto higher dose aza as I felt well on it and I am lucky enough to avoid fistulae so far. I have more of an issue  with big bleeds from the small bowel. My aza was reduced when in hospital and despite that my White cell count and neutrophils dropped really low last week so had to be reduced again. My crohns had not been good since the first dose reduction and has got worse so Pred increased up to 40mg again, iron infusions, blood tomorrow as hb down from 140 in June to 70 yesterday...
Gi said if my wcc drops again when aza put back up then he will go for methotrexate or biologics... But erring towards mxt. He is still hoping the aza will be ok again and its just my body saying it's had enough for a bit!
Good luck for tomorrow- it's all your fault for saying you were a colonoscopy virgin- now 2 in 2 days!!!


----------



## DustyKat

Oh yikes Helen! Sorry to hear about the false start mate... 

Mega loads of luck for the next one!...:goodluck:

From virgin to pro in one fell swoop...utahere:

Cheers hun...:hug:
Dusty. xxxxxxxx


----------



## Dexky

Better luck tomorrow Helen!


----------



## Grumbletum

Now I see what all the hype's about!! Had sedation and was awake for the last part during which I'm sure I squealed more than I did in labour.
Anyway, doc doing it was pleased. Colon is fine. This is from report:
Ileocaecal valve is extremely inflamed and rigid. Mucosa: severe granularity. Could not canalise the TI but took some biopsies from the IC valve.
So will see tomorrow what Dr Potts makes of it.


----------



## DustyKat

Lordy, lordy, lordy they're a cruel bunch over there! :eek2: You poor thing Helen...OUCH!

Good to know the large bowel is clear. I wonder if they will do an enterogram to see how far the inflammation extends, just thinkin' out loud. 

Good luck when you see the doc tomorrow, I'll be thinking of you!

Much love, :heart:
Dusty. xxxxxxxx


----------



## Grumbletum

What's an enterogram, Dusty? Is it a CT scan? Please tell me it doesn't involve things up the bottom. Lol x 
And thanks you lot for seeing me through this xxx


----------



## DustyKat

Breathe easy Grumble! :yfaint:

It is a type of CT scan, can be done with an MRI as well. It is different to a normal contrast CT in that the liquid you drink is designed to line the wall of the small bowel, not be absorbed. Matt had one following his colonoscopy to see how far his inflammation extended as the GI didn't want to push through his TI. 

Dusty. xxx


----------



## Grumbletum

Just seen the nurse practioner. They are aiming to give me the first infusion today, and if it goes OK, I can get home tomorrow. WooHoo!


----------



## Dexky

Best of luck Helen!  Home sweet home


----------



## DustyKat

Yee Haw!!! 

I hope all goes well hun...there ain't no place like home...

	
	
		
		
	


	







Dusty. :heart:


----------



## littlemissh

Here's to hoping your infusion went well and you get home today. At least the windy weather has died down a bit for your flight!


----------



## Grumbletum

Thanks all xxx The infusion went well and I'm all set for the 2 p.m flight. A touch of nausea today, but nothing major. Dr Potty(?) has been fairly conspicuous by his absence. I've seen him once in the 10 days I've been here. Even the surgeon and his entourage were barely suppressing sniggers when I said he hadn't been.
They've been great though, and I'm now being looked after re: the infusions by the only IBD nurse for the Highlands and Islands and he's lovely.
Will have to come to Inverness as there's no infusion centre nearer home but that's OK. 
I will never, ever let anyone knock the NHS again.


----------



## Dexky

Glad it went well Helen  Will you have to fly there?  Sorry, geographical novice!  I'm still looking for the Inner Hebrides!


----------



## DustyKat

Fab news Helen! :banana::banana::banana: 

Have a safe flight hun, everything remains crossed that Remicade is your miracle! 

Lots a love, :hug:
Dusty. xxxxxxxx


----------



## Grumbletum

*Feeling dizzy and a bit sick*

It's been all go since I got back last Friday. Work were fine about me being away for so long. I normally do three days a week, so went in on the Monday and Tuesday to make up some of the time. Got a letter with my next infusion appointment for next Thursday. Geography lesson for Dexky: I have to fly from Benbecula to Stornoway, then on to Inverness. It's only about one and a half hours. But because of the flight times etc, I'll have to go Wednesday afternoon and travel back Friday.
Anyway, last three or four days, the nausea has got worse and I've been feeling pretty dizzy, especially when I get up from bed in the morning. I'm wondering if it might be my blood pressure? They told me it was consistantly a bit low in the hospital and to drink plenty of fluids, which I've been trying to do.
I guess this is not a side effect of the Infliximab because it was low before I had the first infusion, so am wondering if it's maybe because of the steroid taper? I'll mention it to them on Thursday anyway.


----------



## DustyKat

Helen, I think you will need to draw a picture for Dex...:ybiggrin: 

It may well be your blood pressure hun. Dizziness and nausea are signs of a low BP and you most likely have a postural drop when you get out of bed in the morning making it worse. 

Dehydration can certainly cause it but have you had your B12 and Folate tested lately? Depleted levels of these are also a cause. 

Definitely have them suss it out on Thursday. 

Just a tip...when you get up in the morning, sit on the edge of the bed for a couple minutes and then when you stand up wait another 30 seconds or so before moving away. Doing this allows your BP to adjust to the change in position plus not moving away from the bed straight away reduces the risk of you falling should you suddenly feel very dizzy or faint, you can just sit back down again. It goes without saying that that it's best not to leave going to the toilet till the last second! :lol:

Dusty. xxx


----------



## Dexky

Here's a picture for you Dusty  :kissgrits:

Helen, I hope you get the dizziness and nausea sorted.  Assuming Remi works for you, will you have to make that trip for each infusion?  I guess it's a good excuse for a mainland shopping spree but geez it seems a lot of traveling!!  All well worth it if it works though


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## Grumbletum

Thanks Dusty. I haven't had my B12 or Folate tested ever, unless it's something they do as part of the FBC? I'll talk to the IBD nurse about that too when I see him.
Yes, Dexky, it's Inverness each time because there isn't an infusion centre nearer home. But like you say, if it's going to work, then it is well worth the trips.


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## DustyKat

A FBC will not test for those Helen. You will need to ask for them. 

Dusty. xxx


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## Grumbletum

*Ding! Ding! Round Two*

Off on the afternoon flight tomorrow. Here's hoping it's a shorter stay than last time!


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## DustyKat

And Helen comes out with fists held high and ready for the fight! :lol:

Good luck hun. I hope all goes well and is boringly uneventful!...:goodluck:

Have a safe trip, :hug:
Dusty. xxxxxxxx


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## Dexky

How are you feeling Helen?  So many speak of Remi like it's been their miracle!  Hope it's yours!  Travel safely


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## Grumbletum

Hey there. Been a bit rough this week, but I think that's the Pred taper. Other than that, I think things are happening. Stuff seems to be moving through my gut more easily and............ well, I don't want to be gross.
But I'm gonna be!! I am now farting out of my bottom again :ylol: It feels so good and I am so pleased with myself, that I just let rip whenever and wherever. Sorry, Dexky, you did ask!! :redface:


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## littlemissh

Hope all that wind doesn't affect your flight home!!  ;-)


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## Grumbletum

littlemissh said:


> Hope all that wind doesn't affect your flight home!!  ;-)


In fact the good tail wind meant we landed 15 mins early in Inverness! :lol2: Honestly! And it was 24 degrees.


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## Grumbletum

Second infusion done  Most eventful part was that there was an inmate from the local prison there too, with two guards, one of whom he had to be cuffed and chained to the whole time! Asked the IBD nurse if cuffs were optional and he said I'd get them too if I was naughty!
He reckons too that the dizziness etc is the Pred taper: BP was pretty good for me during infusion. And he took bloods for B12 tests, tho he reckons deficiency is more likely in people who've had ileal surgery.


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## DustyKat

So you never did say whether you got cuffed or not Helen. :ylol: 

Good to hear all has gone well Helen and you had some distraction too boot! 

Just my two cents worth (so unusual for me!)...I don't disagree with the guy but I don't see any reason why chronic inflammtion/scarring can't produce the same b12 deficiencies as surgery does.

Dusty. xxx


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## littlemissh

I'm sure Dusty could lend you her pink furry cuffs! 
And I agree, chronic/acute inflammation of the terminal ileum could easily prevent B12 absorption. I don't absorb iron when flaring and I have not yet had surgery.


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## Grumbletum

*To quote James Brown........*

I feel good :soledance:
That's me home, and I just feel really, really good. I'm a little tired, and a little achy, but I just feel so well :ybiggrin: It's been so long since I've had normal in the bladder, and to a lesser extent BM department, that I think I developed a new normal, but things seem to be going back to what they should be.


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## littlemissh

Thats brilliant news! The joys of infliximab.

It has just taken me 15 mins to write his as I have TWO very nosy kittens insisting on walking on me and the keyboard....


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## Grumbletum

So I hear??!! X


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## Dexky

That's a cool update Helen!!  Feeling good!!


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## Grumbletum

*No news is good news!*

Not updated for a while cos, since my last infusion, I have been doing really well. Down to 5 mg of Pred and no major return of symptoms. Wool! Wool! Off for next infusion on Wednesday. Raigmore is a teaching hospital and a doc doing research asked if they could follow my case for a year. So this time I have to food fast for 6 hours before appt and give blood and urine samples.
It's nice to be able to give even just a little bit back


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## Dexky

That's wonderful Helen!!  May it long continue!!


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## SandyM

Grumbletum said:


> Not updated for a while cos, since my last infusion, I have been doing really well. Down to 5 mg of Pred and no major return of symptoms. Wool! Wool! Off for next infusion on Wednesday. Raigmore is a teaching hospital and a doc doing research asked if they could follow my case for a year. So this time I have to food fast for 6 hours before appt and give blood and urine samples.
> It's nice to be able to give even just a little bit back


That's good news Helen and good for you!


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## littlemissh

You will have to change your name soon....and we may not know who you are...horror, stop that infliximab right now. Or perhaps calling yourself nongrumblytum would be a more sensible option!


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## Grumbletum

Ha ha, Littlemiss  And how's the babies? I want Kitty photos x


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## DustyKat

YEEHAW!!! Fab update Grumble!!! 

I'm so happy for you hun and hoping more than anything it lasts a lifetime! anda:anda:anda:

:mademyday:
Dusty. xxx


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## Grumbletum

All well with No 3. My B12 level is normal too and the dizzy spells stopped a couple of weeks back. Getting to be a chunky little Grumbly tho, so they've advised me to up the Aza to 125mg.
Next appt will be another scopeoo: to see what's what and decide whether to keep on with the Remi or not.


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## littlemissh

All looking good Helen. Will they stop remicaide if all looks well then?


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## Dexky

How do you feel about possibly stopping Remi??  The prospect of never being able to take it again seems a little daunting, especially if you have a history of fisulae.  I'm sure you've considered this, so just curious


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## DustyKat

Thanks for the update Helen!  

Fab to hear that all is going well! anda:anda:anda:

I'm curious too as to why they want to stop something that is obviously working well. 

Dusty. xxx


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## Grumbletum

I had a chat with the IBD nurse about it. He did say that they were disinclined to use Remi sporadically, but also have to weigh up the cons of what being on it exposes you too. I do worry about getting fistulas again. I think it would be too early to stop. Last week, I was starting to get fatigued again, but the day after the infusion I felt brilliant.


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## Dexky

Ah, the pros and cons!  Good luck with the decision making Helen!  Like Dusty always says...the devil and the deep blue sea!!


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## DustyKat

Hmmm, no offence Helen...:wink:...but in view of your age, thinking of serious side effects here, I think I would be inclined to stick with what is working, if it ain't broke don't fix it!

Good luck hun and let us know what you decide. 

Dusty. xxx


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## Grumbletum

MY AGE??! How dare you!!
Lol, only kidding. The way I feel is that it took so long to get diagnosed and it's been a bit of a battle to get the inflammation under control. Seeing it on the colonoscopy screen really hit home. I want my Remi fixes!
Not sure if I'll be given a choice, but I'm not too proud to beg!


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## beth

Hahaha! me thinks you are a Remi junkie! :lol:


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## Grumbletum

Sad, but true Beth. I was actually looking forward to getting my infusion last week. X


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## Grumbletum

*A bit scared*

So, about three weeks since Round 3? Also coincided with losing the Pred which I am very happy about, after 6 months of it, but also a little wary as it feels a bit like walking the tightrope without the net.
Tummy, bladder wise good at first. A couple of weeks after the infusion, a fair bit of joint pain, especially in hips and knees. And an acne like rash on my chest.
But last night I almost called NHS24 ( like 911 for those non UK. ) Crippling stomach pains, so I'm trying to figure is it:
A) Crohn's related
B) Meds related
C) Food related ( had seafood for lunch )
I managed to drift off to sleep at 4am and was recovered enough to go to work today. Keeping an eye on things.
I had a GI appointment for the end of this month, but it was rescheduled for mid December due to unforeseen circumstances. It's a bit confusing: I see the GI who comes here, but I'm also a patient of the GI on the mainland who prescribed the Infliximab.


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## SandyM

Hi Helen.
Not so good. Hope things start to settle down for you soon. I am up and down at the moment but reluctant to try any new meds. I am finding I get cramps, bloated, wind etc when I eat what I like or what others prepare for me although think your answer is prob ALL 3. Seafood should be ok - I bet its nice and fresh where you are.

Take care


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## Dexky

When are you due your next Remi Helen!  I hope it's just a passing thing and you can hold on til then.  Rashes and joint pain sure sounds like a crohnie thing though


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## Grumbletum

Yea, I guess it could be a wee bit of a flare. If I am to have another infusion, it would be in about 5 weeks I guess, as I've done the second after two weeks and the third after four. Not heard from hospital yet about the tests they are going to do.
Hah I blame everything on the Crohn's or the meds - including the stone and a half I've put on!


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## DustyKat

Hey Helen,

Sorry to have missed this Helen! 

How are things now, have things settled at all? 

Dusty. xxx


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## Grumbletum

Yes, thanks, Dusty- they have. Guess the tummy pain might have been a bad prawn or sumfin! The rash is only a little patch and not spreading and the joint pain comes and goes. It's actually better when I'm on the move, so I'm gonna get my ass into gear today and print off David's yoga class stuff.
Thanks, folks. Hope all is well with you and yours xxx


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## Grumbletum

*Did I just hear the 'R' word??*

Saw the Stornoway consultant yesterday. For some reason, the Inverness docs have not copied him in on the letters regarding my current treatment which go to the GP surgery. Bit naughty really.
Anyway, he was happy with how things panned out AND said my bloods are very good: CRP is bog standard normal  When he was dictating his notes, he used the words 'a good remission.'
Dare I believe it? Still no word from Inverness re: another scope, or infusion.
We'll see. I am feeling well so here's hoping.


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## DustyKat

*Squeal!!!*

Oh my goodness! I so hope this is the case Helen! I will keep everything crossed to ensure that it is indeed true...

:goodluck::goodluck::goodluck: 

:mademyday:......:heart::heart::heart:
Dusty. xxxxxxxx


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## Dexky

I hope you feel well so long you forget what it feels like otherwise  I'm happy for you Helen!!


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## suschex

Here's wishing you decades and decades of 'a good remission'....what fantastic news!!!!!


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## Grumbletum

Been a while, huh?  Still feeling good and off to Inverness on 7th Feb for the promised colonoscopy to check progress. They've sent me the Picolax here. They just don't get it. The instructions say 'stay near a toilet ' after taking it so how do they think I'm going to make it over there? In nappies?
Anyway, I've emailed the IBD nurse. Better to go over the day before, stay in the patient accommodation which is 5 minutes walk to the hospital and do the prep there.
Might also have to take someone with me as they say you have to but it's a lot to ask when it's not just a couple of hours. I'd probably be better off just getting admitted.


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## DustyKat

So fab to hear that all is going well Grumble! 

Hmmm, I could always send you some of our limited edition Australia Day nappies...I know you've been eyeing them off! :shifty-t: Isn't the tyranny of distance just lovely...NOT! :yfrown:

I so hope the scope reflects the way you are feeling hun, sending loads of love, luck and well wishes!...:goodluck:

Much love, :heart:
Dusty. xxxxxxxx


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## littlemissh

Fingers and intestines crossed that everything looks pristine in there. Then you can be 'proud of your bowel'.
And a bit of mainland shopping as a treat?


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## Grumbletum

Yes, retail therapy definitely in order, Picolax permitting. I would so love to turn up for the test in one of them nappies. I think I'll also learn your national anthem, Dusty, so I can belt it out under sedation!


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## DustyKat

Ahahaha, sounds like a plan to me! Provided they don't schedule you!...:ybatty:

Dusty.


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## Dexky

I hope you get to enjoy some of your mainland stay Helen.  I don't suppose the weather is likely to be much better though.  Go get your "all clear" scope and let us know!!


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## Grumbletum

Right, all organised I think. Flying out tomorrow with my friend. Supposed to take the prep before breakfast, but I ain't risking it, so will eat light and take it when I get there. No flights to Inverness on a Saturday or Sunday unfortunately. And not wanting to abandon DS, Dan, for too long as he starts his preliminary exams tomorrow.
I love living here, but sometimes getting on and off the island can be real pain..... Especially when you throw Picolax into the mix!


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## SandyM

Hope all goes well for you Helen. The joys of picolax ehh!
From memory the picolax didn't work straight away with me but when it did.... omg you don't want to be far from a toilet!

Wise move I think.


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## DustyKat

Good luck Helen! Everything crossed that all is pink and looking marvellous!...:goodluck: 

Have a safe trip, :heart:
Dusty. xxxxxxxx


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## littlemissh

Good luck. Hope all is fine and dandy!


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## Terriernut

Good luck Helen!!! Hope you have a shiney happy colon in there!!! (and a nice toilet)
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx


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## Grumbletum

Lol, thanks folks. Booked single ensuite rooms in a guesthouse as the patient accommodation is four rooms sharing a bathroom so I don't think my 'roomies' woul thank me for hogging the loo and banging about in the night!


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## Dexky

Oooh, yeah, that could be bad!!  Good luck Helen!  Looking forward to a good report when you get the results!


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## DustyKat

Most considerate of you Helen! 

Perhaps I should send Sarah to you for etiquette lessons! :biggrin: She had the use of a priavte toilet at school but preferred to use the public ones, where upon completion she would proudly announce to all those who cared to listen...I wouldn't go in there if I were you, I have a bowel disease! :lol:

Dusty.


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## Grumbletum

DustyKat said:


> Most considerate of you Helen!
> 
> Perhaps I should send Sarah to you for etiquette lessons! :biggrin: She had the use of a priavte toilet at school but preferred to use the public ones, where upon completion she would proudly announce to all those who cared to listen...I wouldn't go in there if I were you, I have a bowel disease! :lol:
> 
> Dusty.


Lol@ Sarah, and good for her. I'm not really being considerate. I'm just scared of pooping in my PJs if shared bathroom is busy :rof:


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## littlemissh

How ya doing? Not sure what time your colon peek is but hope it goes well tomorrow.

ps @Dusty, Sarah sounds like a real feisty young lady...good on her!


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## Grumbletum

Not too bad, thanks. Have had first sachet of Pico and am living up to my username


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## Dexky

Is it post scope Helen?  I hope it went/goes well today


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## Grumbletum

:rosette1: Thank you. Setting off for hospital in half an hour. How you get little kids to cope with all this, I will never know. Poor babies :-(


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## leithcote

Hi, cross-posting here, but hope the immunologics are working well for you. Thanks for all the lovely messages btw. So best wishes to you from one end of the country to the other!


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