Hi Mary Anne! I'm only on stage 1 of 3 but thanks for your support regardles. :smilewinkgrin:...
Can you upload pictures on here?...
I'm out of surgery! I feel excited, relieved, scared but HAPPY! The surgeon managed to do everything with only 1 (maybe 2/3 inch) incision and the stoma opening. Very clever guy. Anyway, I'm off my...
Thanks - I'm anxious but I've been so ill that I'm also excited not to have colitis anymore. Too long have I put up with its bullshit....
Just seen the surgeon. Im first on the list of planned surgery tomorrow. They have a huge team and Mr Khan (one of the top IBD surgeons in the UK - does these operations 500 times a year. Both...
Thanks I can't wait to have an element of normality back in my life!...
Thanks - I need that. It's so depressing in here. I want out now....
Still haven't had confirmation of tomorrow. Could be thurs. Lots of mixed communications here. Doing my head in....
Thanks for the support everyone!...
Yay! Good for you!...
I'll need to time it and have breaks at work to empty....
Thanks it does help! I miss being at back at my flat with my wife and the normality of going to work. I love my job. It's gotta be harder having a bag as a girl as image is a much bigger deal... I'm...
In the UK. Similar story to you. Diagnosed with colitis 4 years a go. Managed to control it with salofalk tablets and pred foam. 4 Years later and a nasty cellulitis infection which had me on IV...
Yes. Getting a pouch too. Also typing from hospital! Been here for a month now. Madness. They got me fairly stable on steroids but no other meds worked and with the odds stacked against me with an...
Thanks for your response. I'll keep this as updated as I can. Pretty sure ill have the extra time on my hands! Ha!...
Laproscopic robotically assisted 3 stage starting thursday! Scared and excited at the same time. I can't wait to be rid of this diseased colon! After meeting other people with pouches I think I'll be...
Thanks again buddy. It's nice to hear positive stories. I'm on a large amount of steroids so it has to be a 3 step. I'm stable right now. I'm in a flare but not getting any worse or better. They're...
Just been stoma mapped! Agggghhhhhhhh scary! :shocked: :shocked: :shocked:...
Thanks buddy. Really appreciate you sharing your experience. I appreciate it won't be easy. Both mentally and physically. Im ready for it now - I just need this colitis ridden colon gone....
Thanks you beautiful people!...
Just in case anyone is still reading my horror story, It's looking like surgery Friday! :shocked: :shocked:...
I'm in the UK so it's NHS and costing me nothing but my taxes. Well that and time off work but that's my fault for being a self employed hairdresser! Ha!...
Oh yeah... And orange juice = bad idea....
Codeine is helping with the pain in the cocyx area which I'm told is colitis flare related. It's also helping me relax more. Double bonus. I've been taken off Azathioprine and they aren't going to...
No... In the last meeting with the surgery consultant and medical consultant the plan was to taper pred in place for a two step. That's clearly not going to happen and hopefully I set the wheels in...
This is absolute shit. I'm getting worse again. The bathroom trips are slowly creeping up and I'm on so many drugs. I don't understand why nothing has touched it. I just want them to hurry up and...
I hope they find a non surgical cure for this disgusting disease one day. One thing that really gets my goat about it is when people ask my family or wife how I am and they say; "He's in hospital...
7-10 with urgency and wind is best it's been in ages. It was 20 - 25 of just blood over Christmas. Horrible. The surgeon here is top dog this side of the country for IBD surgery. He does it mostly...
Yeah, it's just a percentage. Betting odds really. I'm not a betting man but 80% chance of ending up back here in a year or five are odds you look at seriously. I'm 34 and want to be in control of my...
Thanks ipoop. I'm done with the battle and can't live with the 80% chance this'll happen again. Not good odds. They'd shoot me if I was race horse! Ha! They say I'll deffo need surgery in 5 years....
Well, still in hospital. None of the meds are working as quick as they should. I've been told there's an 80% chance of this happening again in the next 5 years. At 34 I can't love with those odds....
Thanks for your response. I'll ask the doctor again....
Thanks for the pointers people. When I'm having mild symptoms I find the predfoam easy and can keep it in all night or all day... Flared it's another story. Especially trying to use two one after...
Didn't have much luck with the enemas tonight. While I'm flared it's what's to be expected though I guess... They stayed in for a bit.. Oh well, I'll try again tomorrow....
Thanks for your responses. It's really kind of you to bother. I have just been handed salofalk enemas by pharmacy. Bit nervous about using them. I'm used to the predfoam ones - is it a similar...
Glimmer of hope. I've secretly been worrying thinking "I'm going to need surgery" and it's been really getting me down. The surgeon consultant came to see me today and said that he doesn't think...
They have me on a low fibre diet in here. Fairly difficult as a vegetarian....
Thanks. That's a very informative post. I'll know who to hit up with any questions!...
So. Had the flexi today. Not the results I wanted as it's still showing inflammation. Particularly lower down. They were hoping for the Infliximab to have shown a little progress by now. They have...
No Flexi yet - hopefully today. Just don't feel like I've made any progress at all since making the transition to prednisolone oral 3 days a go. Toilet trips to pass pretty much water are still off...
Thanks. Will do. I think the flexi will be tomorrow....
Just an update. They're going to do another flexible sigmoidoscopy to see what progress the Infliximab is making inside. Bloods showing inflammation is still down so that's good news. The blood has...
One thing I have noticed since starting Infliximab is really dry skin... At first I just put it down to living on a hot stuffy hospital ward for 8 nights and counting but with research it looks like...
The standard 5mgs I think. Just seems like nothing can stop me running to the toilet so much......
They have mentioned surgery as a last resort a few times. I have no idea what any of that entails though. I'm just going to keep my fingers crossed here... Hopefully now the inflammation going down...
Yep. No C-diff. I normally use pred foam rectal too but in the swings of this serious flare it was too painful and just wouldn't stay in. I wonder if it's worth reintroducing now though? Or at least...
Thanks for the replies. Blood tests have shown that the inflammation has come down A LOT. The Gastro told me the inflammation was at 107 when I came in and it's down to 7 now. He's confident the...
Hi Everyone! I've read these forums for ages but never posted. I was diagnosed with Ulcerative Proctitis roughly 4 years a go. Controlled and in remission a few months later with the use of...