Date for surgery and an angel thrown in 😇

[Thunderguts]

Afternoon all. Wow what a day. So after an emergency referral to see surgeon to discuss options, my surgeon wasn't there Got his minion who agreed surgery was best route blah blah, but wanted me to book another appointment to see his boss It was looking like weeks, again. Thank god for specialist nurses is all I can say, she tried to get hold of my AWOL mystery man with no luck but wasn't happy sending me away to wait to obstruct again so managed to tag me on to the other surgeons clinic while I was there It was buy one, get one free today I love that nurse so much, she was my guardian angel and without her I'd have ended up crying on another car journey home again. She was so knowledgeable and reassuring, bloody pay rises all round when I'm in charge.

I'm provisionally booked in for the 9th November for right hemicolectomy, illeal resection, valve removed and some fistula issues sorted. Any experience of this surgery would be greatly appreciated, my head is swimming. Got most of my concerns answered but sure I'll have forgotten something. Does anyone have experience of vaginal/cervical fistulas? Or adhesions? This seemed to be the only part he wasn't sure about so is checking over MRIs and consulting back with my gynae this aft? Are MRIs the best method for checking such things or will it be a job for barium or some other way? I'd love to think it will all be done on the 9th but as we all know it never works out like that.

So pre op in a fortnight, and remember remember the 9th of November I'm ready for it. Happy but scared. Jo

 

[scottsma]

I don't have any experience of the above but I just wanted to wish you well.

 

[Clairegard1979]

I am also due to have a right hemicolectemy on the 9th November!!! Would also be interested to hear from others who have had this x

 

[Thunderguts]

Thanks Scottsma It's a relief knowing I've finally got a date.

 

[Thunderguts]

Yay Claire We can be surgery buddies? Day after my Mums birthday too. There's some good threads in the 'your story' section of the surgery posts. Really good advice. I keep thinking of questions I should have asked while I was there Hope you're doing ok in the meantime? Take care, Jo

 

[Clairegard1979]

Yes we can!! Can you contact your surgeon in the meantime to ask the questions you have thought of? It's hard to think of them when you are trying to take all of the other info in! I'm doing ok, some bad days and others not so bad! Although I do feel a weight has been lifted off my shoulders knowing I'm going to have the op and finally get this sorted (hopefully!) which has made me feel better generally! Although of course I am nervous. Think it's the thought of the Unknown, how I will feel after etc!
How are you feeling about it all?

 

[Thunderguts]

Me too Claire, it's been like limbo waiting. At least with a date it's something to aim for. I'm awful at the mo, never been this bad but taking it easy and hanging on rattling around in pyjamas looking pale and interesting I've got the nurses number and I'll be having a pre op week before so sure I can get more info. I had a read online so feel a bit better. Did you get all the info you needed? How long have you been diagnosed if you don't mind me asking and have you flared lots over time? I've had troubles for 22 years, started when I was 18 but they put it down to IBS, stress, grrrrrr My doctors always said 'suspected' Crohns which doesn't really help but I've coped with flares over the years with steroids etc, was only three months ago I got official diagnosis, it showed up beautifully on a MRI So I'm an old hand, but newly diagnosed. Lol might ask if I get a badge or something? So I keep swinging from relief that I'm finally getting taken seriously to rage about why it took so long to blind panic One day at a time though, today was the realisation I've bought pyjamas instead of nighties for hospital? Yeah pretty sure that wasn't the right thing to do

 

[Clairegard1979]

Yes I think I got most of my questions answered... I have done quite a lot of reading up online too so feel as prepared as I can be! I've got my pre op next week. I got diagnosed last December. But like you have had symptoms for so long! About 18 years. Kept getting fobbed off with the it's IBS we can't do anything! Til finally last year I went to the doctors in tears and said u have to do something, it's taking over my life! Then had a blood test which showed inflammation and then got referred for a endscopy which confirmed it at last! I went private for that, was always Nhs before. Not sure if that made a difference to how seriously they took it! I got referred back to Nhs and since then been on anti inflammatorys and tried two different kind of steroids but no joy. So they decided an op would be my best bet. Since then I had an MRI which just showed what they already knew which was good!
I don't feel I have big flares but lots of mini ones I.e I can feel absolutely awful one day then not too bad the next! No idea why and if this is normal but seems to be the way it is for me.
Ooh I've got pjs too.... Why aren't they a good idea?? I must be missing something lol
Sorry u aren't feeling good, take it easy and hope you feel better soon!

 

[Thunderguts]

Weird isn't it Claire, you always know but getting that official label is like whoa Sounds like you've been in exactly the same boat as me, drains you physically and emotionally. I considered private because funnily (well not funny at all really) this flare either caused, or started off gynae symptoms so I've been back and forth between clinics for two years. It was in fact a run of the mill scan for cysts at gynae that showed the first thickening on bowel. After that I really pushed for an MRI. Lol I'm guessing PJs won't be very comfortable or practical with drains and scar? I got a couple of cheap nighties from Asda but secretly I'm feeling the need for some feather trimmed 70s nylon number ala Margo from the Good life. Just because I'm defective doesn't mean I can't be glam

 

[Clairegard1979]

Yeah it is hard to finally hear it, as it's something you'll always have now! And hard to believe. Every time I go to the hospital I expect them to say we got it wrong you're fine like I heard for so long!
How long do your flares last?
Hmmm I didn't think of that about the pjs I got some loose comfy ones but I'll have someone who can run and get me a nightie if it's too uncomfortable! Lol your glam nightie sounds gorgeous!

 

[Clairegard1979]

Ps are you having keyhole or open surgery? Where is your hospital? Mines in Southend on sea, Essex

 

[Thunderguts]

Lol or go away you're constipated, here's some ibuprofen I'd say I've only had four big flares over the years that needed steroids. Rest have been painkillers and a pat on the head Usually only a few weeks but this ones been rumbling for at least a year and last four months have been epic, hairs fallen out, toenails off? Pain is unbearable. They said keyhole, with a small incision but like anything if more is needed they'll wing it. Should be in Lancaster I think? Kendal is actually closer to us but it's a tiny place so the Mister will be doing 50 mile round trips with baby wipes and haribo We are right at the top of Lancashire

 

[Clairegard1979]

Oh no that is such a long time to be suffering!! Hopefully the op will stop the flares for a long time!
I have noticed my hair has been falling out a lot too, I wondered if it was related!!
Good luck with getting all your questions answered and good luck for the op! Let me know how u get on x

 

[Thunderguts]

I will Claire, expect drug fuelled updates You too, hope everything goes well x