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Crohn's Disease Forum » Support Forum » Vent Away » What a week it's been!


05-13-2012, 09:07 AM   #1
emmaaaargh
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What a week it's been!

I'm more than a little frustrated right now - it's been such a long week!

I went in for my colonoscopy on Tuesday and about half an hour before I was due to go for my anaesthetic a doctor came around to confirm the procedure. I suppose the first thing to tick me off was that I was never told I'd have a camera down my throat, too. I know I shouldn't have been too annoyed - hey, I'd be asleep - but I'm a bit of a control freak, so not knowing that until the last second really ticked me off.

When I came to, my parents were looking a bit worried next to me. I joked about a bit on us waiting to go home, but they informed me that the doctor, upon seeing the many ulcers in my insides, wanted to keep me in for a few days and pump me full of steroids. Again, didn't seem such a big thing at the time... but first of all, no doctor even came to see me until I was due to be punted off Day Surgery and into the ward and two, nobody really explained to me the extent of the ulcers or what the steroid was (after some digging I found out it was methylprednisolone). No wonder I was grouchy by that point - I hadn't a clue what was going on and it was awful.

The next two days were kind of uneventful, although aside from my IV I had blood drawn twice and wasn't really told why at all. Then, the day before I was discharged, my consultant (who, you will probably figure out soon, I hate) came around and mumbled that he would give me some prednisolone for a while... and then book me in for an Infliximab infusion.

This didn't sound right to me. I did some digging (ah, the internet!) and found out that the NHS won't supply infliximab unless steroid treatments and other immunosuppressants are ineffective. So why was he insisting on putting me on it as soon as he could? This might just be me being paranoid, but I really would love to avoid infliximab as much as I can. The stories of reactions I've heard surrounding it freak me out.

I just don't know any more. My parents are at their wit's end, too - the doctor tells them next to nothing either and his bedside manner is appalling. They say they will attempt to get me a second opinion but I don't know if it'll work.

I'm just so frustrated right now. He might be a good doctor knowledge-wise (even though I've seen no evidence to prove that fact!) but he's not at all accessible or approachable and I'm just so angry.

Just had to let that out. It's been a hell of a week and while the prednisolone is working (or at least I feel like it is, since I've only been on it five days!) , I still don't want to have to face the infliximab at all.
05-13-2012, 10:11 AM   #2
Rebecca85
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I think you must have gone to the same hospital as me- the bit about doctors doing things and not telling you why really struck a chord!

Luckily, the doctors you see as an outpatient are better. The hospital docs tend to be who ever is on call, so may not be a specialist in IBD. And they are under pressure to get round you all ASAP.

However, as an outpatient you are assigned a consultant with a relevant area of expertise or interest. And they are allotted 20 minutes or so for each appointment. And even if you are assigned to the same consultant as you had in hospital (I wasn't thank goodness!) they work as a team so you won't always see him.

One of the best things you can do is prepare a list of questions or concerns, to make the most of your 20 minutes. I personally would refuse to take any treatment until I had been informed of the risks, side effects etc. I came to that conclusion after being put on IV steroids same as you, only I went a bit loopy on them, and I was scared because I thought I was going mad, I didn't know mood swings etc could be a side effect.
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05-14-2012, 05:31 PM   #3
Spooky1
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i always have ulcers from mouth to stomach to duodenum etc. seems to go through to terminal ilium stricture too. you can ask for the print out of their procedure and the photos of them. not sure why you were offered infliximab so soon either. if the steroids are making you feel better then perhaps you could stay on those and refuse the infliximab. hope you get better soon
05-14-2012, 06:22 PM   #4
Jenny06xx
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Location: Cwmbran , gwent, United Kingdom
Hey em where in the uk are you from exactly ?
And which hospital did u go to ?
Can u remember the docs name ?
It's just so we can all avoid him if he's near us lol

My doc was awful !! I've been with him 8 years and just changed to a new 1 in jan this year , it's the best thing I've ever done !!
I literally hated going to see my gi because he always told me I had ibs or it was in my head without bothering to do any tests until I was really sick in hospital and on morphine!
He had to do the test then and hey presto CROHNS ! Great lol
My new gi is a pleasure to see an very helpful , so if your stuck in the same situation I was an he's your main gastroenterologist then swap very quick !
Just go to your gp ( a nice one coz this isnt really something they HAVE to do for you ) and explain you just don't see eye to eye with you consultant and youd like a fresh set of eyes on your illness and treatments .
I hope this helps a bit
Jen xx
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diagnosed with crohn's disease September 2010 symptoms since 2003
Acute pancreatitis 2003
gallbladder removed laprascopic 2003

Meds

Budesonide finished again !!
Pentasa 2g 2x a day
Pred 40mg
Ensure plus ( no longer needed)
Dihydrocodeine 120mg slow release 3 a day
Dihydrocodeine 30mg 2.. 4x day
Tramadol 50 mg 2 ...4x a day ( stopped coz it's not helping )

Waiting for fist appointment at pain clinc I hope it helps !
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