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JEEEEEZE what's going ON in there?? Anyone up for a bowel/ibs/ibd/wtf thread

282 replies

MrsBrady · 09/06/2016 10:52

Fed up? Stuck in? Off work? Can't eat? Can't play? Can't or don't want to burden your nearest and dearest? Fancy a bit of a vent?

I'm currently on day infinity of partial house arrest

dx with microscopic colitis this time last year- all good

now having a total bastard of a flare that's been going since January and shows no sign of fucking off

I. AM. SO. BORED. OF. THIS

last week I had to take a poo sample to the gps. Again. The receptionist showed me the elaborate way you're supposed to arrange the bag and label, but I said 'ooh don't worry shsowing me love, that's the last one of these you'll be getting from me'

and less than a fucking week later, there I was again this morning, with me warm bottle clutched in my fist. And I STILL didn't know how to fold the label

I'm worried it might be uc instead. The symptoms seem to tally.

I really really don't want uc. I really really really don't want Crohns can't spell it

anyway. Enough about me. How about YOU

OP posts:
ShortyShortLegs · 09/07/2016 23:16

Scary glad you are out, hope you are feeling better Flowers

I have just finished a course of Prednisolone for a nasty allergic reaction. I always have a reducing dose but it was a much higher dose this time. Starting with 8x5 mg a day, then reducing by 1 tablet every three days.

I also have Type 2 Diabetes, the steroids do make your blood sugars go high. Apart from that I don't get side effects, but maybe because I've had them on and off for years for asthma attacks and allergies.

ShortyShortLegs · 09/07/2016 23:56

I've come back from holiday today to find another hospital appointment...a CT scan of the bowel, with a bottle of Gastrografin to drink before hand. It contains Iodine, which I am allergic to so I need to ask for an alternative.

They're going to love me - I've already had to phone and let them know I'm allergic to latex for the endoscopy!

MrsPnut · 10/07/2016 07:34

I'm tapering off steroids at the moment too and frequently feel a bit spaced out and jittery. The insomnia isn't great either.

Scarydinosaurs · 10/07/2016 07:53

This is so reassuring! Thank you for all the good wishes.

On Thursday I had a super big dose (two through IV and then nine 5mg tablets) and then nine 5mg, now onto eight for five days before reducing by one every five days until I'm off. However- it's made a massive difference and combined with the mesza tablets and enemas I've seen a huge difference.

Just need to get on top of it all now! So many tablets and things to remember! I'm trying to keep to my hospital routine as it worked so well, but already I'm two hours behind!

ShortyShortLegs · 16/07/2016 11:14

WARNING BAD ENDOSCOPY EXPERIENCE

Well, I've had my endoscopy - it was the worst experience of my life. Even worse than the when I had a drain removed with a kink in it and I nearly passed out with the pain. And worse than when I had my tonsils removed at 17 and they pinned me to the bed in recovery by the shoulders, even though I was having an asthma attack and couldn't breathe.

So, I had to eat before 9am, nothing except small sips of water after that, get there for 3.15pm as I had been put last on the list due to latex allergy. I was actually called in at 5.15pm Shock (and I am diabetic, my medication relies on me eating regular meals so I should not fast for that long)

I have to say the nurse who went through the procedure was absolutely excellent, explained everything and really put me at ease. She said the doctor had been very thorough and wanted the second part of the looked at and two biopsies to be taken.
I went in, was told to lie on the bed, signed the consent and had the cannula put in for sedation. Then, the doctor (not the lovely one I was told would be doing it) said that the numbing throat spray makes your throat swell and feel like it is closing, the same as an allergic reaction - so if I was allergic, it would be hard to tell. So I had to make a decision in 15 seconds whether to have the numbing spray or not, with him telling me he didn't think I should (I do have multiple severe allergies to medication, food, chemicals, etc.) I said if he thought it was best, then I wouldn't have it. BIG MISTAKE.

The nurse stuck the mouth guard in so quickly and without warning that I didnt have room for my tongue. Then they gave me the sedative WHICH DIDN'T WORK. Then without warning the endoscope and biopsy thing were put in, scratching all down my throat and making me bring up bile/acid because I hadn't been allowed to take my Omeprazole, so they had to put in a suction tube as well. Two people held me down at the shoulders and another two at the hips, another one saying squeeze my hands (he must of had bruises afterwards) and I just kept on being sick. They were putting in air all the time and the doctor was annoyed because I just kept bringing it back up (involuntary reaction) and I was struggling to breathe and was crying in pain.
The nurse had said if I wanted them to stop at any time, then I had to do a thumbs down signal, but when it comes to 'fight of flight' that kind of goes out of your mind! And I doubt anyone would have noticed anyway, they were all too busy holding me down and telling me not to be sick Confused it went on for ages, sick, air in, air violently burped out, sick, air in, air out..it was honestly fucking horrendous, and I am pretty much hard as nails, can usually let them get on with anything, not anxious at all.
And, to top it all, I wet myself with the burping/sick spasms. Blush

So, they got the two biopsies, pulled everything out, and then just walked away and left me sobbing on the bed, not even offering me a tissue or a pat on the shoulder Angry Sad
A few minutes later, I was wheeled through and dumped in recovery, without a word to me. The recovery nurse who was lovely, came and held my hand, gave me tissues and sympathy, cleaned me up and said she'd get DM from the waiting room (DH was working). She put me in a side room to recover instead of the day room with the others because I was so upset and couldn't speak properly. I had to stay there for ages until I could drink tea properly, then she went through everything with me. Everything looked normal except I have fundic polyps, although that is apparently nothing to worry about and can happen if you've been on Omeprazole for a long time like I have.
So, I have to wait four weeks for the biopsy results (testing for Coeliacs) and then see the consultant in 6-8 weeks. I have the CT Scan of my bowel tomorrow - they are doing it instead of a colonoscopy because of my complicated history, hernias, mesh, etc.
My throat is still really hurting, feels like I have swallowed some bricks, and is all phlegmy, still an effort to speak and swallow. My chest is also hurting and I have had an allergic reaction to the tissues and possibly something else..my eyes have swelled up and so has my mouth and tongue, I look shocking, back to my GP on Monday for more steroids I think.

Oh, and now my fucking period has started, and i don't suppose I can use my menstrual cup during the CT Scan? I can imagine the confusion that would cause!! (Allergic to disposable San Pro)

I can safely say I will NEVER have an endoscopy done again!

Scarydinosaurs · 16/07/2016 11:42

Oh shorty that was so awful. And what dreadful timing for the scan tomorrow!!

Can you use the cup and then remove and wear knickers plus a natural towel (are you allergic to the natural towels?) or even failing that, knickers with the view that you will change out of them straight after the scan??

I imagine wearing the mooncup will be more troublesome than it's worth.

bigarse1 · 18/07/2016 19:06

had my appointment with surgeon today. she was brilliant but had only a temporary file with literally only the letter from the consultant to the surgeon so no notes on any tests or anything they found! she had a good nose up my rear end (lovely) and said she would be happy to operate but would mean a general and surgery and that until the diaherrea is under control it would be too painful. she says I am putting on weight because my body has gone in to starvation mode.
we have agreed she will do nothing at the moment and will write to consultant saying they need to sort other things first

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