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09-20-2012, 01:47 PM   #1
Grumbletum
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Surgery tomorrow - yikes!

Well, Freddie Kreuger the Fistula will finally bite the dust. They're gonna take a small loop of bowel that's stuck to my bladder where Freddie's been hanging out. I'm not even nervous.......yet. Just strangely relieved.
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Dx Crohn's terminal ileum April 2011
Ileocaecal resection & partial cystectomy Sept 2012
3.5 years happy remission, in mild flare since Feb 2016 with related Portal Vein Thrombosis

Previous: Prednisolone, Mesren, Omeprazole, Infliximab, Azathioprine
Current: Pentasa, Librax, Warfarin
Helen x
09-20-2012, 01:57 PM   #2
DustyKat
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You are having a resection Grumble???

I'm sorry if I am out of the loop! I have been really hit and miss of late.

Dusty. xxx
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09-20-2012, 02:06 PM   #3
Grumbletum
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Yes, a little one hopefully. The fistula reared it's ugly head again.
09-20-2012, 02:08 PM   #4
Dede C.
 
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Hi there, I had a similar fistula, but mine had gone around the large colon—I'll be thinking of you tomorrow, Grumbletum, and good luck! "Think positive," that is such a good mantra.
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Bowel resection in 2006
(removed 20 cm terminal ileum and 15cm section of large Sigmoid colon due to fistula and granuloma)—On Low Dose Naltrexone, probiotics, high-potency turmeric, L-Glutamine to reduce severe flare in November, 2012....Seems to be working.
09-20-2012, 03:07 PM   #5
littlemissh
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Lots and lots and lots of luck Helen!
Is that the only affected area, as for some who have limited small bowel disease and have it resected they can be in remission for a long time. Hope thats you!
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Diagnosed Crohns small bowel 2010,Gastroduodenal crohn's Jan 2012. Gastroparesis june 2014.
Duodenal perforation/peritonitis nov 2011. Portacath placed Nov 2013. Gastric pacemaker 2015.
Perforated jejenum/peritonitis oct 2015, PEJ for enteral feeding nov 2015

On Humira every 7 days, intermittent iv iron, regular blood transfusions :faint:
On TPN since March 2016.
09-20-2012, 04:01 PM   #6
Grumbletum
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Littlemiss, thank you, and yes from the MRI they think that's the only bit x
09-20-2012, 04:33 PM   #7
DustyKat
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Well hush my puppies and prune my magnolia's! I am living in cupboard!

Sending you MEGA loads of love, luck and well wishes for a successful surgery and a super speedy recovery!...

I hope more than anything you have the success that Sarah and Matt have.

Onwards and Upwards!
Dusty. xxx
09-23-2012, 01:26 AM   #8
Grumbletum
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Have ended up with an ileocaecal resection as the area was badly inflamed. They took 30cms of small intestine and had to take a small disc shaped piece of bladder and repair cos of the fistula. He also managed to do it laparoscopically which is great as I'd already got a long vertical scar.
09-23-2012, 01:32 AM   #9
DustyKat
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So good to hear from you Grumble!

I hope you feeling okay, given the circumstances, and you have an uneventful recovery!

Good luck hun, I am thinking of you!

Dusty. xxx
09-23-2012, 02:26 AM   #10
littlemissh
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Thats great it could be done laparoscopically. How are you feeling?
Hope you get to eat something soon and that you don't have to stay in for too long.
Are you going to remain on maintenance meds now, they'll probably want to kep you on aza I would think.

Sending some wee cyberhugs your way....(trying to get into the scottish lingo there!!)
09-23-2012, 04:01 AM   #11
Grumbletum
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They were giving me Oramorph and have switched to Tramdol which kind of wipes me out. They told me I can eat and drink as normal as I'm on advanced recovery! But I don't feel ready for that. I'm up and moving, but still feel pretty bloated and windy so asked them for some Fortijuice to keep me going.
09-23-2012, 04:09 AM   #12
DustyKat
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Advanced recovery! Did they tell your bowel that!

They may well be right, I don't know, but I would want my bowel a little more time to adjust to the changes. I think you are right to listen to your body and act accordingly.

Onwards and Upwards Grumble!
Dusty. xxx
09-23-2012, 07:02 AM   #13
Grumbletum
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Absolutely. Little Miss, they stopped the Aza the day before the surgery so must remember to ask if I should go back on.
09-23-2012, 09:37 AM   #14
scottsma
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Very best wishes to you Helen,feel better soon.
09-24-2012, 05:44 AM   #15
Grumbletum
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Ugh. I've developed a chest infection. They've given me antibiotics and a nebuliser to make me cough. Ow! Ow! Ow!
09-24-2012, 06:14 AM   #16
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Aww Helen, I am so sorry you have a chest Infection.
I hope you are being looked after well & although they have you eating all sorts on advanced recovery take it easy, I do think the bowel needs a little more time to rest, mine certainly did.
Best thing I did was get a Kindle after my op. I sat & read lots of books & at least that kept me still for a while.
Take care Helen & keep us posted with your recovery.
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09-24-2012, 06:14 AM   #17
scottsma
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Ugh. I've developed a chest infection. They've given me antibiotics and a nebuliser to make me cough. Ow! Ow! Ow!
OW,just what you DON'T need eh? You poor soul.Did you pick that up in the Hospital? You hope they're going to make you well not heap more misery on you.Still,your ops over so I hope that's an improvement for you.Do you have to go to Inverness or Fort Willy hospital? Hope you have a speedy recovery Helen,and don't do too much too soon
09-24-2012, 06:34 AM   #18
DustyKat
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Oh no Grumble! That sucks!

I hope you are soon feeling better and don;t forget to hold onto that pillow when you cough!

Dusty.
09-24-2012, 07:26 AM   #19
Ckt
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Ouwie!!i hate to cough after surgery!! Hope you are feeling better soon and you heal quicker than lightening!
09-24-2012, 08:28 AM   #20
Grumbletum
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They said it's quite common after abdominal surgery and I guess having been immunosuppressed won't have helped. Yes, Scottsma, it's Raigmore in Inverness.
09-24-2012, 08:43 AM   #21
Dede C.
 
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Hi Helen, aka Grumbletum, I had the same ileo secal resection surgery, in 2006, and I'm still in remission! Hang in there.... Mine was vertical incision, which was six weeks of recovery, so you will hopefully get over the chest infection with antibiotics, and get on the road to recovery! Listen to your body, and don't do too much, or eat something that doesn't totally appeal to you. The gut-brain connection is so strong! Reintroduce foods one at a time and write down your responses in a daily journal. I hope you won't need the Azacol!
09-24-2012, 01:57 PM   #22
Terriernut
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Thinking of you lovely Helen! Get over that nasty chest infection. Nasty business those. And yes, it isnt uncommon after ab sugery. I managed two, one right after I got home, one right after I went back to work from the op. It hurts like hell to cough.

Please get well soon xxxxxxxxxxxxxxxxxx
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DX Crohns Feb 2011, symtoms 1997, 2009 and then WHAM! Emergency surgery for perforated sigmoid, fistula through fallopian tube, septic and near dead: Colostomy-Stan was born 22/12/10. Another parastomal hernia, his name is Ollie and he is MONSTER size!
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09-25-2012, 02:22 AM   #23
Grumbletum
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Lol. I got it wrong as usual - its 'enhanced recovery' - whatever the hell that means! Anyway , I'm treating myself to coffee to this morning to see if I can get my bowel over the final hurdle . There's been lots of talk but no action - if you know what I mean LOL!
09-25-2012, 03:34 AM   #24
tiloah
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I hope the rest of your recovery goes smoothly. Sending good healing thoughts your direction!
09-25-2012, 04:43 AM   #25
Kip1
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Lol from one Helen to another, I though as soon as I had posted re advanced/enhanced but my brain seems to be a little more fuddled than normal since I had the surgery. Maybe its because Im not at work or maybe its an age thing.
It took about 5 days for the final hurdle for me but as my dad said once the seal has been broken ...........
Will you be going back on the AZA once you have recovered?
09-25-2012, 06:21 AM   #26
scottsma
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I've had a little giggle at you trying to "get your bowel over the final hurdle" Are you training for the next olympics? Hope your coughs easing a wee bit.
09-25-2012, 07:20 AM   #27
Grumbletum
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Lol, yes I'm feeling lots better tho my temp keeps going up and down. I keep forgetting to ask about a maintenance med. I've a feeling the surgeon would say no ( he made a slightly catty comment about Infliximab. ) I'll speak to the GI and/or GI about cos tbh I'm scared to lose my safety net.
Mind you, that was me on it for a year and obviously the inflammation wasn't under control. Surgeon said a loop of bowel was firmly stuck to my bladder, that IC valve was still rigid with inflammation and cecum so badly damaged they had to remove it too.
Yet my colonoscopy 'looked ok' and crp wasn't raised . Scary.
We took my dressing off again before I went for a shower and the scar is a tiny, toty wee one :-)
09-25-2012, 08:13 AM   #28
scottsma
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well at least you can get your bikini on.I'd wait 'til the weather calms down though.I'ts terrible down here.Best Wishes
09-25-2012, 10:37 AM   #29
littlemissh
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Happy hoorays for tiny scars. Hope your chest gets better soon without too many ouchy coughs...its horrible how much it hurts to cough when you've had your insides chopped up...feel for you.
I reckon there should be a ban on checking CRP as it lulls too many doctors into a false sense of security when it is normal...mine too was normal even when bleeding loads and right up to when I perforated....so many people have the same story.

You could put a banner over you bed to that effect whilst in hospital....

Get better soon and hope you soon have 'results' and can escape home.
09-25-2012, 12:50 PM   #30
Grumbletum
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I have a cystogram tomorrow and if I can pee before Friday morning, I can go home.
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