Sunny, when it came to my surgery for crohns a year ago my surgeon recommended a proctocolectomy. I was offered a temporary ileostomy to see how I would get on but as I only wanted to go through...
Jennifer, Mine was scheduled on D-Day last year. It got delayed a bit until July but all went fine and I haven't looked back. Quality of life is so much better and the anxiety of worrying about...
The filter is quite large on the coloplast sensura bag. It is across the top. I think all you can see is a small rectangle on the front. The stickers are for when you bathe or swim. Apparently...
I had an epidural for my proctocolectomy. It was brilliant. As I didn't come out of surgery until 10pm I was up walking the next day. It was removed on the 5th day post op. Its slightly higher than a...
Sunny and Eva Lou you will both be fine. I did just as you are in asking lots of questions, doing endless research and basically talking to my friends and family until I got fed up with the sound of...
Like Summerstorm the butt bit of the op bothered me most. Needn't have worried though. It itched a lot and I got a bit of a rash but sorted it with a basic barrier cream and all was ok. The thought...
I agree. I get the same feeling and it just means its working....
Hi Lauren, I agree its a hard decision to make. I was diagnosed with crohns in 2003 and spent the first year on steroids. I then was given an infliximab infusion that lasted a year. Then another that...
NCOT like some of the previous comments, I never shower with the bag off. My daily routine is - shower with bag on, once I'm dry I tuck the new bag under my arm to warm the wafer, remove the old bag...
Whenever my skin starts to get a little sore I go back to using the Salts Confidence Natural bags that I used after my op....
It was uncomfortable but not as bad as I was expecting. I didnt need any pain medication. I walked quite a bit, changed position a lot and rested on the bed. I used a large pillow and alternated...
Hi Dianna, I had my proctocolectomy back in July. It was also done laproscopically. The perineal wound was sutured and all I did to keep it clean was just turn the shower hose on it when in the...
Hi Matt, I second what desertsun and smd have said. I too had my colon, rectum and anus removed a few months ago after suffering with crohns for 10yrs and haven't looked back since. I had a permanent...
When the skin around my stoma gets sore the first sign is a sharp pins and needles feeling. I've had a couple of occasions when it felt like my stoma was painful and it seemed to be the result of...
I can do the same. I'm ok about it and glad I have some muscles down there as I guess it may mean that there is less chance of a prolapse/hernia happening in that area?...
I was the same and believe it or not, it was more comfortable sitting on something like a formal dining room chair. Are you doing plenty of walking as that seemed to help me as well. Regarding the...
Hodaya, I'm just over 8wks post op proctocolectomy with anal closure and all is well and comfortable. I had what felt like a lumpy ridge then after about 3wks the sutures dissolved and the ridge...
I also live in Bucks and as far as I can remember from previous posts, so does NCOT. Perhaps we should set up our own mini group!...
Gentle abdominals but no sit ups. The ileostomy association website in the UK has a good exercise leaflet you can download. The physio I saw post op gave me some exercises which seemed to be based on...
I know how you feel. Had crohns for 10 years and nothing kept it under control in the end. It took a long time for me to decide on surgery (permanent ileostomy with anal closure). I was petrified but...
Good luck and hope all goes well....
Well done Rebecca and mum! Seems like someone is listening. Make sure you get propped answers to your questions now. Hair falling out - mine has also done the same and is very thin now. Its been put...
Hi Rebecca, I would have thought it's time to rattle a few cages and generally make a nuisance of yourself. Can you not phone the doc or take your Mum to A & E (ED), explain your concerns and your...
Sounds like the sutures have been in too long and have caused a localised infection. As everyone else advises, I think you need to see a dr....
Smd729 l was virtually in the same position as you although I only have had crohns for 10yrs but the last 7 have been awful. I too had tried and failed all the meds you have mentioned. I eventually...
Hi Simon, Like lovetoski, my consultant was Mr George. He did my proctocolectomy a few weeks ago and recovery has been brilliant so far. I also have a perm ileostomy so no knowledge of a j-pouch...
Hi Nana 1950, I also had my rectum removed and anus closed when I had my colectomy just over 3wks ago. I was in Hosp for a week. I had sutures in the anal wound and these have dissolved now and I can...
Hi MM, yes I did have anal closure. I had some irritation which I used sudocrem (nappy rash cream here in the uk) and it worked a treat. I tried using sanitary pads but they made it worse so like...
I'm just over 2wks post op and I am out and about and walking as much as possible. I find walking is no problem but sitting is still a little uncomfortable as the wound hasn't quite healed yet. Its...
Many thanks for the support. I survived the experience! It was a 9hr op as apparently my colon was a bit of a mess. So I did make the best decision which makes me feel good. They did it all via...
Well its arrived, my surgery date that is! Been stewing over this for months now and will be having a proctocolectomy and end ileo on Thurs! I'm scared witless and not sure whether to be happy or...
Thanks for posting this probiotic. My rescheduled date for proctocolectomy with end ileo is looming next week. Although I've had a few months through the ringer deciding on if its the right decision...
My Humira was stopped early March pending surgery. Surgery now due July 11th....
John Radcliffe at Oxford. I started off under SMH but was referred to the JR research team as I was beyond their expertise and have been going there ever since. I used to work in Ayles so know all...
No so you can keep the curtains open! I know pitstone and visited there often. It's Buckingham for me and I go to the JR. Where do you go - I'm thinking SMH or L&D?...
NCOT - It's a small world! I'm in Bucks as well. Not far from Aylesbury....
JB I had the lot - pred, remicade, humira, methotrexate etc for 10yrs and yes it kept me going but as you say yourself, it has really only delayed the inevitable in that I'm a fifty something now and...
NCOT I have Crohns and was due for surgery today for a proctocolectomy with end ileostomy but it was cancelled at the last minute and just waiting for a new date. I'm about to be in your situation so...
I'm fed up! I've been waiting 3 months for the biggest and only surgery of my life only to be called yesterday and told that it had been cancelled and a new date will be sorted! Due to have...
My surgery is due in 2 wks so I'm no expert but from my previous knowledge and advice from people on this site here is my take on it. It will probably be an ileostomy - no point in keeping a rotten...
Oh yes, I remember it as if it were yesterday! I have ordered a pstyle so at least I have something if I can't sit down. Thank you for the heads up on how its likely to be. I feel much more prepared...
I'm female so it's on my shopping list. It's the anus wound that bothers me most as it seems that quite a few of you have had problems there. I'm in the best shape I have been in for years so...
Dear All, thank you for all the advice. Much appreciated. I'm going to write down the key points and take it in with me I think. Blue glass - yep the whole lot is going inc anus. I'm not on pred. Was...
Hi, I wonder if anyone could help with some advice please? I'm due to have my proctocolectomy with perm ileostomy for Crohns in 2 weeks. Ive posted a couple of times in the last month or two about...
I have been on remicade then humira and methotrexate for 9years now and my hair has got really thin. I've also lost all of my eyebrows and hair on my legs and arms. I've blamed the meds but my...
I haven't had my op yet but I was going to try what I have advised my patients in the past - use two bed pillows long ways in the chair and part them slightly where you need to. Ring cushions sound...
Thanks for the advice. I know what you are saying NiceCupOfTea - there are no guarantees with Crohns but apart from at my initial diagnosis when I had some duodenal leisions, so far I have never had...
Many thanks for all the advice. You really are a brilliant group. I know that its best to get it done while I'm in reasonably good health so no better time than now. When I was really ill I wouldn't...
This is my first post on here. As I’m in more or less the same boat I thought I would add to this thread - forgive me if it’s not the right approach. I made the decision to have a proctocolectomy and...