Hi all,
New here. Diagnosed with UC in 2003,10 + years on Prednisolne, Asathiaprine, Pentasa, finally Infliximab when nothing else worked. Hospitallised Jan this year, in three weeks and finally had to have ileostomy. So I now have the dreaded bag. It's not THAT bad to be honest, but only been out three weeks. I'm worried about going back to work, I'm an Electrician, and it's very physical. I'm told 13 weeks from the op, so 10 weeks now, that sound about right?
You have done well to get this far. Dont worry about going back to work. You will be fine after a day or two. Good Luck!!!!
Hi Chris....are you keeping bag or thinking of having pouch surgery later. U didn't mention ur age for me to hav a guess ! I hav uc 26 years have now developed stricture 30cms in and was told I now need surgery as chances of cancer rise with it and docs can't c past it to make sure other side colon is ok. I was up seeing surgery yest who has recommended ileostomy for me as I'm 61 coming and obviously body parts aren't in as good a shape as younger person . I hav I hope come to terms with it but not liking thought of surgery. My husband met guy other day who was 60 plus a lorry driver who said surgery was best thing he'd done and another friend of his knows 60 plus guy in building who has had no probs either so u should hav no problem when u hav got the workings of bag down to fine art. One has to keep positive outlook as being negative would hav one crying and feeling sorry for ones self. Hope all goes well and if u hav any hints or tips for me ...they would b most gratefully accepted . MJ
Hi Mary,
Thank you for the reply, I'm 50, so probably on the younger end for this type of op at a guess? I'm pretty fit, active job and all that, so I think I've been pretty lucky with recovery so far.
As regards the Op I can only tell you my experience, which may be very different to yours.
The Op itself is litterally nothing, I went down at 3.30pm Saturday, and woke up early Sunday morning, no pain, and pretty unaware of anything having gone on.
The problems I had were with the epidural needle in my spine for painkillers, basically it pulled out on Sunday night, and I was in severe pain for 12 hours before they realised it had gone wrong.
I have a small tail left to my bum so that I can have the pouch later if I want to, no one told me that this still secretes mucus, so I would still need to go to the toilet to drain it, after 4 days I was very uncomfortable, then it drained itself in the night, I paniced and thought something had burst in there! Nurse just cleaned me up and said "it's normal, didn't they tell you?" well, no they didn't!
Also after working fine for 2 days my bag stopped working, apparently the stoma had "gone into shock" after the Op. I was really worried for 3 days when nothing came through, had X Ray / CT scan, all OK, then late on third day it just started up again.
I actually feel fine now, just very tired, and have to be careful about lifting etc, but no problems really.
Hope this helps?
CW.
Hi Chris... Glad it's been ok for u. Lucky u that has it behind u. Yeah mucus is quite common as I've read about every article on the Internet lol. Did u have urs done keyhole. How long were u in hospital for ? Did u have a nasogastric tube up ur nose into ur stomach for any time. When did u start eating . After spinal did u have any other pain relief and when did pain subside. Do u have any difficulty with the bags . Do u think u might go for the pouch.. I kinda worry and my surgeon is not too keen...pouch has life span of approx 20 years and I wouldn't fancy if I was still alive trying to get used to bags at that age lol . Plus he says there are more difficulties when u get older. Don't no if he's just trying to put me off notion of pouch not that I very strongly favour it. Sorry so so many questions but it's nice to hear of a recent experience of it. Mary Jo
Hi Chris....I was just watching video on the United osteomy association of America or uoaa and they have great video on people with ostomies and what can be done afterwards Worth watching. MJ
Hi Mary,
I was in hospital for 22 days, but that was because they were trying Infliximab again first, and trying to stabilise me. I lost 15kgs in 5 days, and was bleeding internally, so I was very weak before they decided on surgury. As a result I couldn't have keyhole, there wasn't a time slot, I went in as an emergency on the Saturday. In any case as keyhole surgury takes longer, it wouldn't have been suitable for me as I was too weak from bloodloss etc.
I started eating straight away, well within 24 hrs anyway, soup and ice cream to start, solids after 48 hrs. I had no appetite problems, just went back on a drip when the bag stopped working. I was out of hospital 10 days after the op, if it wasn't for the complications I would have been out in 7 days.
I didn't have any drains / tubes fitted at all.
I had oral morphine on request while in hospital, as well as Tramadol and Parasetamol. I'm still on the Parasetamol, and only take the Tramadol when I need it.
The bags are no problem. I change them every other day. Cleaning and changing takes 10 mins. I shave around the area once a week too, but you won't have the hairy belly issue I reckon!
Only problem I had was not reducing the size of the hole as my stoma healed / shrank. I fitted a bag with too larger hole, and had burning from the stomach acid around the wound, not nice at all. I'm very careful to check there is no gap at all around the stoma when I fit a new bag now. Bags are clear so it's easy to check. In 3 weeks my hole sizes have gone 32mm, 30mm, 28mm, now 25mm.
Personally I doubt I will go for the pouch, but in time I may think about it. It just seems such a huge thing to go through, and I'm not convinced it would be much better to be honest.
Good luck! Keep us updated, and don't worry (stupid thing to say!)
Hi Chris...thanks for reply. Must say your post op experience sounded pretty good not that I'm looking forward to any of it but needs must and I have resigned myself to it....another chapter in my life lol. You did have a horrendous time pre op ! Do you have to empty bag many times during day and at night ? Yeah have read u have to be careful that skin does not get burned with the matter coming through. Thanks for the reassurances. Much appreciated. I shall keep you updated on my progress. The next part for me is meeting up with the surgeon again and the stoma nurse. MJ
Hi Mary,
Emptying the bag is no problem, just takes a minute, I currently empty it about 6 - 10 times a day, and usually once at night. I could get away with less, but as I am at home I do it quite often. Depends on what I've eaten / drunk, a cup of coffee in the morning on an mpty stomach fills the bag pretty quickly, whereas a sandwich can stop anything coming through at all for 3 - 4 hours.
Hope it goes OK with the Surgeons, and if your Stoma nurses are as good as mine you will feel a lot better when you've seen them.
CW
Am glad to hear it's not a long some procedure . I believe as time goes on the number of times decrease. Read somewhere if u take fibre like psyllium or metamucil it thickens it the contents. Someone else on a forum was also saying if u put couple drops peroxide in bag pre use, that kills any odours. Mind u odour can't b any worse than what I have with uc lol. Will keep u posted and thank u for answering my endless queries . MJ
I had mine carried out in Oct 2014.i have now with specialist help been told I can go back to work.Since I have had the operation done find that it is getting much easier.I am a bit apprehensive about going back but I'd rather try now than regret it.Obviosly it will be a massive change and some of the work I have to perform is mentally draining.The company have been brilliant and they have helped me by putting a pathway back.
Hi Craig,
Glad to hear you are on the mend, what type of work do you do?
I'm looking at going back after 13 weeks from the Op, my work is very physical, lots of heavy lifting, ladder work etc, so I'm not sure how it will go.
CW.
Hi Craig. Glad to hear u have urs behind u and I am sure ur return to work will go very well. I had written on comment in this theme someplace.....I watched 15 minute video of the United ostomy association of America or uoaa abbreviated version of various people who had the surgery and their return to work and their hobbies etc and what they have achieved. It is totally inspiring and I would definetly say go watch it....it will give u oodles of hope and faith in what u will now b able to achieve in life and ur return to work. MJ
Craig...forgot to ask did u have straightforward post op recovery. When u mention specialist help if u don't mind me asking did u have some problems ? MJ
As I have FAP the concern was that I could develop a tumor which occurs when the muscle in the abdomen is disturbed.Touch wood av been fine.I had a few teething problems like using the bag,panics if the stoma bled,fear of eating the wrong food but more recently I have been expieriencing some irritation when replacing the bag.
I work for Astra Zeneca which produce Flu vaccines for the southern hemesphire.I too some heavy lifting as well as bending up and down.I am looking forward to returning but a bit aprehensive.Been off for nearly 6 months.
Wow that is a long time.this illness is terrible.i havn't worked since June when I first started with it .
Well i suppose there r teething problems with all things and it takes a while to become confident and competent . I suppose if one has any skin sensitivity it can pose a problem. Maybe if there is another type bag or products to use. Some of the forums are good for picking up all kinds hints and tips. If u look at that video I mentioned it will definitely give u confidence in what u can achieve . MJ
Hi Chris.....how are u this week.Hoping u r continuing to improve. Also a? For u. Did u suffer from fatigue during ur time of uc and if so do u now notice this disappearing. I always thought it was due to bleeding and low iron stores bot apparently study has been done and fatigue is a symptom of uc. I was wiped today. I get up in mornings with low grade tiredness which gets worse as day goes on ! I was putting it down to my age but after reading info on it think it's the uc, so now I'm curious if post surgery uc ers feel less fatigued, if at all, and at least that would be another reason for making surgery worthwhile. I'm tired off being so under productive. I like to b busy most of the time instead of lying around. Ta MJ
Hi Mary,
Yeah not too bad this week, I still get very tired, but that's just post surgury I think. I'm still reducing the Steroids, on 20mg / day now dropping to 15mg next week, so they give me a boost.
I was always tired during the time I had UC, so I'm looking forward to getting completely off ALL meds so that I can remember what it's like to have normal energy levels again!
Hope you are OK?
CW.