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Booking surgery no matter what

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Crohn's Disease
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Posted 1/16/2013 10:08 PM (GMT 0)
Long story short: Crohn's relapse, pain which made it feel like an alien baby was trying to hatch out of my intestines, and... well, that was it really. The diarrhoea was only a problem in so far as every time I went to the toilet it sent my intestines into a complete and utter (excruciatingly painful) tizzy for hours, as did eating or drinking anything.

So my dad got me an emergency appointment with a GP (not my own one). And guess what I'm back on? Yep, the dread Pred... <_<.

I could've gone to A&E and would've done, had the GP not given me steroids. I was hoping to get some more painkillers too, but she wouldn't when she found out I still had a bit of codeine and tramadol left :-/

Been utterly strung out today. Was weak and dehydrated; I may be should've gone to A&E for fluids now I think about it, but I could not be arsed spending a week in hospital unless there was literally no other option.

Anyway, booking surgery ASAP. Tried to book it today, but the stupid surgeon's secretary never got back to me :-/
Posted 1/17/2013 12:05 AM (GMT 0)
Will keep you in my thoughts and prayers for a successful surgery and a very fast recovery!

Before you know it, you will be eating good food and wishing you had surgery sooner!

Take care!
Posted 1/17/2013 12:15 AM (GMT 0)
{{{{{{HUGS}}}}}} Hoping for a quick confirmation of your plans!
Posted 1/17/2013 3:26 AM (GMT 0)
hey ncot, what kind of surgery are you getting? i remember we had a convo about how having surgery will never get rid of your disease like it would mine.

anyway, i know those same bowel movements and hate them. i sometimes squeeze and twist my fingers so hard that i'm surprised i haven't broken them multiple times.
Posted 1/17/2013 3:33 AM (GMT 0)
(((hugs))) I'm sorry. Sometimes surgery though is the best option. Even if it can't fix it, at least it can get rid of the most diseased parts. The pain is hard. I usually have to bite into a towel to keep from yelling in pain. Hope it all goes well for you!!!
Posted 1/17/2013 6:53 AM (GMT 0)
Hi I am sending you hugs!!! My prayers are with you for a speedy recovery.
Posted 1/17/2013 10:31 AM (GMT 0)
Not an easy decision NCOT but one that will hopefully bring you relief and give you your life back as it has for me.

My email is in my profile if you want to chat.

Best of luck! Once you are through recovery you will kick yourself for waiting so long to have the surgery! It's such a wonderful relief!
Posted 1/17/2013 2:15 PM (GMT 0)
For whatever it's worth, I definitely think you are doing the right thing. I hope you get scheduled soon and all goes well. I'll be thinking of you. Let us know how you are doing.
Posted 1/17/2013 3:09 PM (GMT 0)
Wish you luck, be prepared though, once you have surgery it is not a forever fix, I had my second resection last January and my lastest colonoscopy shows active disease again, I have just about run out of options of meds, hope all goes well
Posted 1/17/2013 4:57 PM (GMT 0)
Thank you for your well wishes, folks!

I phoned the surgeon's secretary again today; turned out she got my message but hadn't been able to decipher my phone number - oh whoops >_>. With any luck, she will get back to me with an actual date tomorrow.

Meanwhile, I also got a letter today putting off my February appointment with my consultant until May. Steaming at that, so I phoned the IBD nurse. She said they were a doctor down, and all the other patients had received similar letters. I can't say that mollified me very much, but there was no point raging to her about it, so I didn't say very much. Told her that I had wanted to speak to the consultant about surgery and coming off Humira - she said she would speak to him to try to get an earlier appointment...

I'm due a Humira injection this Sunday, but I don't think I will take it. It hasn't had the slightest positive effect and it's probably - like other meds - responsible for my anaemia. I can't see the point of having iron transfusions (did I say I was having those next week? I've forgotten <_<) if I'm just going to become anaemic again in a matter of weeks. I would've waited to speak to my consultant about it, but since I have no idea when I am seeing him next, I can't be arsed to.

The Pred is not kicking in as fast I would like :-/ To be fair, it has done something for the intolerable pain; that's always the first to go. But still having some pain and other symptoms, and am scared to eat anything - sticking to liquids and a few, very soft, foods. Half wished I'd gone to A&E and got admitted, as the IV steroids work faster, I think. But hospital stays have their own numerous drawbacks, so I guess it's half of one, half a dozen of the other, etc.

Phew. Quite a lengthy update/whinge, sorry about that <_<.

@bananagirl - Almost certainly a panproctocolectomy, which is removal of the colon and rectum. Some of my symptoms are colitis ones, so I'm virtually certain the Crohn's in my colon has not gone away... :-/

@porkysgal - I know, that's why I delayed booking surgery for so long >_<. But if the Crohn's comes back, it comes back: I can't carry on like this. I have become completely Pred-dependent... :-/

Again, thanks, everyone, for your well wishes! It's also my birthday this Saturday - just felt like saying that! :p
Posted 1/18/2013 5:19 AM (GMT 0)
ncot... gee wiz, good luck with everything.... randy
Posted 1/18/2013 10:37 AM (GMT 0)
Good luck, NCOT. I reached a similar point 7 years ago and opted for a total proctocolectomy w/ileostomy. I wish I had done it sooner!

Oh - and a very happy birthday to you on Saturday :-).
Posted 1/18/2013 8:21 PM (GMT 0)
Cheers, randy and nenagirl :p

On the downside: no news from the surgeon's secretary about a date yet ;_; That's probably because it snowed. And when snowflakes land on the ground in the UK, pretty much everything grinds to a halt. Despite the steroids taking a long time to really get going, I'm glad I'm not in hospital right now. Chances are half the staff won't be in and my parents probably wouldn't have been able to visit - it would've been a right tedious misery, especially on my birthday.

Can't eat a lot yet still and only eating really bland, soft foods, but will make some egg custards and fairy cakes with raspberry icing tomorrow <_<.
Posted 1/25/2013 6:56 AM (GMT 0)
Oh, NCOT, I'm so proud of you! You've been on the misery train long enough, it's time for you to get some relief!

I really am so happy for you. We will all be here for you while you get through the next few obstacles. You WILL get through it! :)
Posted 1/25/2013 12:57 PM (GMT 0)
Thank you, RMT :p

Not got a date yet, but finally got through to the surgeon's secretary today, who will send out an appointment for me to see the surgeon in her office. 'It won't be months, will it...?' I anxiously asked ¬_¬. Just a couple of weeks, I was reassured. We shall see.
Posted 1/25/2013 3:55 PM (GMT 0)
Sending healing (((((hugs))))) your way
I will keep you in my prayers. Hope this next step finally gives you some peace
Dave
Posted 1/25/2013 4:26 PM (GMT 0)
Go for it, NCOT. I wish you everything good, including an uncomplicated procedure, a quick and easy recovery, and a much improved physical (and therefore emotional) status afterwards. You'll be in my thoughts.
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