Bowel surgery for Cronh's, any experience
Discussion
Hi folks.
Had a consultation with my surgeon the other day and I am now on the waiting list for a resection surgery, probably sometime in the spring 2014.
Plan is to remove some of my small bowel, a small piece of my large bowel and the ileum joining area.
She stated that non keyhole surgery is the best option due to size of piece needed taken out and so they can have a good look asbout too.
She has suggested telling my work I could be off for 6 weeks and about a week stay in hosp too, it could be less as I am otherwise healthy and no other issues like overweight etc.
Has anyone had a similar surgery and what their recovery was like, i.e. can you move about easy enough (I assume I will be on some fun painkillers for a week anyway)but just wondered what the main issue is, i.e. bending, sitting to standing.
I.e. can I sit and play pc\console, or is it a case of lie in bed bored?
cheers
Had a consultation with my surgeon the other day and I am now on the waiting list for a resection surgery, probably sometime in the spring 2014.
Plan is to remove some of my small bowel, a small piece of my large bowel and the ileum joining area.
She stated that non keyhole surgery is the best option due to size of piece needed taken out and so they can have a good look asbout too.
She has suggested telling my work I could be off for 6 weeks and about a week stay in hosp too, it could be less as I am otherwise healthy and no other issues like overweight etc.
Has anyone had a similar surgery and what their recovery was like, i.e. can you move about easy enough (I assume I will be on some fun painkillers for a week anyway)but just wondered what the main issue is, i.e. bending, sitting to standing.
I.e. can I sit and play pc\console, or is it a case of lie in bed bored?
cheers
Mr_Fish said:
Hi,
I had my ileum removed in 2001, The surgery was ok, I had an epidural which did help with the pain in hospital but was quite sore afterwards. I was in hospital for about a week. They wont let you out till you poop so majority of it is based on that. Recovery was quite slow was off work for 3 months, I have a scar from my hip to my belly button from it. Its hard getting around at first but stick with it and you'll be up and about soon. I spent pretty much all the time watching films and playing consoles. Rest as much as you can you'll be fine, oh and take all the painkillers you can as they really do help....
Cool, sounds a lot like what the Surgeon was explaining. Hopefully they don't have to make too much of a scar over the 'bend' of the hip\thigh as that would be sore moving and make getting about a pest.I had my ileum removed in 2001, The surgery was ok, I had an epidural which did help with the pain in hospital but was quite sore afterwards. I was in hospital for about a week. They wont let you out till you poop so majority of it is based on that. Recovery was quite slow was off work for 3 months, I have a scar from my hip to my belly button from it. Its hard getting around at first but stick with it and you'll be up and about soon. I spent pretty much all the time watching films and playing consoles. Rest as much as you can you'll be fine, oh and take all the painkillers you can as they really do help....
Don't read google forum info about the after effects of surgery....catheters and purple man parts was a worry!!
Hopefully should be fine, just never had moajor surgery before, just mil surgery to remove \fix a bleed and take a sample to test (which showed I had Cronh's about 11 years ago.)
Ah well, means I may get through the wall of plastic kist I have mocking me hehe....or just play battlefield online till my eyes bleed.
3Dee said:
Since 1985 I have had 2 sections, last one in 1998.
The first one I was in for almost 3 weeks (they did things different then) with a neat cut on the speedo's line all the way across.
Biggest problem was for me that the anaesthetic for some reason cause bladder retention, which was very painful & a bit frightening at the time, but once identified I had a catheter fitted. - not nice!
The second one was much quicker (1 week in hospital, and as you can imaging I was very wary about the bladder problem, but was assured that anaesthetic procedure and drugs had changed, so sure enough, no probs. I ended up with a cut from sternum to groin though, so when on holiday it looked like I had an upside-down cross on my belly!!!!!!
Since then Crohns came back (pretty much expected) in 2011 - so 13 to 14 years respite...
More surgery? No, this time I decided to try a pill recommended to me by my specialist - azathioprine.. and although it is rife with side-effects it worked to a degree...
A year on and because I was suffering with things like skin problems etc.. my specialist suggested that he might persuade his panel to let me go on adalimumab (Humira) injections, which are hugely expensive and thus the panel have to prove that other treatments like the former either did not work or caused too many problems... which they did.
This should not be taken lightly as you have to be screened for things like lung problems and other things, and can have dire effects on your liver if not regulated properly...
I am into my second year on two weekly self injections and it is amazing..... I am crohns free after 25 or so years, but have to be very careful with infections as it is a strong immuno-suppressant! Would recommend.... if you qualify!
That's very interesting, thanks for that The first one I was in for almost 3 weeks (they did things different then) with a neat cut on the speedo's line all the way across.
Biggest problem was for me that the anaesthetic for some reason cause bladder retention, which was very painful & a bit frightening at the time, but once identified I had a catheter fitted. - not nice!
The second one was much quicker (1 week in hospital, and as you can imaging I was very wary about the bladder problem, but was assured that anaesthetic procedure and drugs had changed, so sure enough, no probs. I ended up with a cut from sternum to groin though, so when on holiday it looked like I had an upside-down cross on my belly!!!!!!
Since then Crohns came back (pretty much expected) in 2011 - so 13 to 14 years respite...
More surgery? No, this time I decided to try a pill recommended to me by my specialist - azathioprine.. and although it is rife with side-effects it worked to a degree...
A year on and because I was suffering with things like skin problems etc.. my specialist suggested that he might persuade his panel to let me go on adalimumab (Humira) injections, which are hugely expensive and thus the panel have to prove that other treatments like the former either did not work or caused too many problems... which they did.
This should not be taken lightly as you have to be screened for things like lung problems and other things, and can have dire effects on your liver if not regulated properly...
I am into my second year on two weekly self injections and it is amazing..... I am crohns free after 25 or so years, but have to be very careful with infections as it is a strong immuno-suppressant! Would recommend.... if you qualify!
I am on Azathioprene now, have been since about April, 100mg now 150mg.
I was always put on steroids before that, which helped but as you probably know the side effects aren't great, fat bloater with spots haha.
The Aza does help, I don't have the vindaloo river in the loo now, the issue I have is gut pain, basically feels like very bad trapped gas but its apparently muscle squeezing to hard and scarring in the ileum so while the Aza helps with the inflammation, it cant reduce the scarring.
Hopefully this will give me a good few years of symptom free, as the main issue is I am still nervous about going on journeys and if I get a cramp I don't want to do stuff, so feel bad for the mrs etc.
Hopefully all will be well, my MD was great, he said time off was fine and not an issue, I have offered to take work home on laptop and any coal face stuff will be dealt with by w.shop manager. (I do QHSE for my sins)
I plan to horde LOTS of lego, already got the GF buying me the technic crane for xmas
Rick Parfait you say....I never knew he had Cronh's.
TVR Sagaris said:
I've had Crohn's for 12 years and had surgery in a very similar area to you in 2008. I haven't had any symptoms since, so it has been a remarkable success - this is the only time I have ever been properly well since being diagnosed.
You need to prepare for coming out with a colostomy bag; this is always a risk, and a risk that is impossible to measure before surgery begins. A colostomy will be temporary, but makes life more difficult and removal requires additional surgery.
Fortunately, I did not have to have a colostomy and my surgery went well. I have a very, very neat scar that few people notice. I had an infection (which is common) following surgery so had to stay in hospital for around 10 days, but recovered quickly otherwise and was in college as normal two months later.
I'm still on azathioprine to reduce the likelihood that I will require further surgery. Sadly, repeat surgery is common, so while azathioprine is a nasty drug, it is helping extend my good health and I have not had major side effects. I was also on infliximab for a while, which did not help at all, have had three courses of prednisolone (which caused significant short-term side effects), and began on mesalazine and a polymetric diet through a tube.
Surgery is the only treatment that has ever given me a good quality of life, so I wish they had done it sooner.
ETA: epidurals are the norm now; I had one and, of course, a catheter. They put the catheter in while you are asleep, so no trouble there, and removal is painless, although slightly odd. I had lots of pain when the epidural was removed so had morphine, which wasn't nearly as effective.
Surprised there are so many of us You need to prepare for coming out with a colostomy bag; this is always a risk, and a risk that is impossible to measure before surgery begins. A colostomy will be temporary, but makes life more difficult and removal requires additional surgery.
Fortunately, I did not have to have a colostomy and my surgery went well. I have a very, very neat scar that few people notice. I had an infection (which is common) following surgery so had to stay in hospital for around 10 days, but recovered quickly otherwise and was in college as normal two months later.
I'm still on azathioprine to reduce the likelihood that I will require further surgery. Sadly, repeat surgery is common, so while azathioprine is a nasty drug, it is helping extend my good health and I have not had major side effects. I was also on infliximab for a while, which did not help at all, have had three courses of prednisolone (which caused significant short-term side effects), and began on mesalazine and a polymetric diet through a tube.
Surgery is the only treatment that has ever given me a good quality of life, so I wish they had done it sooner.
ETA: epidurals are the norm now; I had one and, of course, a catheter. They put the catheter in while you are asleep, so no trouble there, and removal is painless, although slightly odd. I had lots of pain when the epidural was removed so had morphine, which wasn't nearly as effective.
Edited by TVR Sagaris on Wednesday 13th November 01:57
.Top repliues here folks, very helpful and informative.
I am aware of the possibility of a bag, which will in all likelihood be temporary, but hope I can get away without it, was always something I was paranoid about for years.
For me the main issue is pain in the are, like bad cramps, but sometimes you get a week or so and its 'mild' i.e. to many would be quite painful but as most of you will know, pain threshold goes up with cronh's due to hard experience hehe. However you then get it for days on end and it bothers your sleep, I cant sleep on my right hand side when lying on my front as its very uncomfortable (I have always slept on my front).
So I do worry if I am going for surgery 'just because' and I could cope with the abdomen pain, however if the surgery can remove the pain and the nervousness of being out and about without panicking if I get stuck in traffic etc that will be a world of difference.
The other thing I have looked at (I am on the Cronh's forum too), is the story with prep and recovery food wise. I assume before surgery it would be the ususal don't eat or drink for a day or so and you get the dreaded fizzy sachets to drink hehe (bad times), and afterwards you would eat liquid, like thin soups and juice for a day or two, then start things like mash potatoes and non fatty stuff?
I have never really found any foods make me worse or better so very hard to cut stuff out, as nothing makes a big diff.
Fingers crossed it goes well, my mum was a nurse for years and I know a lot of the nursing staff and one or two of the consultants to talk to so hospitals have never scared me, but this is first major surgery, but I would have thought I wouldn't get an epidural, surely I would just be under general??
honest_delboy said:
Colitis, total colectomy in 2009, keyhole, bag for 20 months (had some complications)
Despite being keyhole i was cut from my johnson up to my belly button, this made driving a little difficult as i struggled with the clutch and moving my legs in a scissor motion if you see what i mean.
Going up and down stairs was tricky for the first few days. Cat jumping on top of me after i'd been home 20 mins was painful.
I had an epidural in for 5/6 days and come out with very weak legs, this made standing for anything longer than a few mins quite tough.
Good luck, if you have any Q's fire away.
Well luckily living on my own with the GF we don't have cats anymore, so should remain pounce free Despite being keyhole i was cut from my johnson up to my belly button, this made driving a little difficult as i struggled with the clutch and moving my legs in a scissor motion if you see what i mean.
Going up and down stairs was tricky for the first few days. Cat jumping on top of me after i'd been home 20 mins was painful.
I had an epidural in for 5/6 days and come out with very weak legs, this made standing for anything longer than a few mins quite tough.
Good luck, if you have any Q's fire away.
honest_delboy said:
Pre-op for me was just loads of questions about health history and some swabs for MSRA testing, one up your nose one in your groin.
I forgot to mention about the meds, they won't let you go home until you've had a bowel movement but any opiate based pain killers is going to slow down your system and bung you up. If I had to do it all over again i'd definitely take less pain killers.
Define...'IN' the groin..... :SI forgot to mention about the meds, they won't let you go home until you've had a bowel movement but any opiate based pain killers is going to slow down your system and bung you up. If I had to do it all over again i'd definitely take less pain killers.
Yeah I expect the opiate based painkillers to make you bit bunged but hopefully as they will probably have you on the picolax before and liquid diet after etc.
I have been told I will probably need the Vitamin B too.
The main issue with the Cronh's ATM is stopping me from queing for a midnight launch of the xbox....I know this is childish in the grand scheme, but it means I am left to be fecked about by online retailers.
Need my console for recovery haha
The main issue with the Cronh's ATM is stopping me from queing for a midnight launch of the xbox....I know this is childish in the grand scheme, but it means I am left to be fecked about by online retailers.
Need my console for recovery haha
honest_delboy said:
In the groin = the crease between your scrotum and inside leg. Don't worry, they give you different swab to stick up your nose.
I'm on B12 once every 3 months but I feel its not enough, i'm pretty much on my chinstraps at the end of the 12 weeks although my blood test shows i'm within the range. I've reduced it to 10 weeks now to see if that helps.
Do you find you get tired if not sooner than 10 weeks do you meanI'm on B12 once every 3 months but I feel its not enough, i'm pretty much on my chinstraps at the end of the 12 weeks although my blood test shows i'm within the range. I've reduced it to 10 weeks now to see if that helps.
The food thing always makes me laugh, family and friends are always adamant that if I eat, sweets, crisps, curry, etc etc it will cause my problems. They wont be told that food has very little effect on it all, its the bowel not the stomach that's the problem.
Well my pre op was easy, bloods taken the week before so was just nice chat, lots of leaflets and the usual 'fill this jar' malarkey.
So hopefully that's me on the waiting list till about Feb\March next year. Main concern is that I get stuck in hospital with a problem, as I know they wont let you out till you have gone to the loo and being at home would be better.
Well my pre op was easy, bloods taken the week before so was just nice chat, lots of leaflets and the usual 'fill this jar' malarkey.
So hopefully that's me on the waiting list till about Feb\March next year. Main concern is that I get stuck in hospital with a problem, as I know they wont let you out till you have gone to the loo and being at home would be better.
dumfriesdave said:
Hope your op helps you Rick.
Surprised to hear you have such a long wait for your surgery.
My first time I went to see specialist on Thursday to view the x-ray results of my barium meal, and had surgery the following Monday.
I was given an expectation that would probably be about 3 months, but they have to see you within that time frame.Surprised to hear you have such a long wait for your surgery.
My first time I went to see specialist on Thursday to view the x-ray results of my barium meal, and had surgery the following Monday.
It could be sooner, but obviously Cancer patients take precedence of freed up appointments/cancelations.
I am not in a HUGE amount of pain or discomfort just sort of constant twinges and sharp stabs so get bit down, and very windy which isn't the best.
But hopefully all shall go well and not major post surgery dramas during recovery.
Update:
Got my Op date through today.
Surgeons Secretary called and gave me the 5th of February.
They do this thing now where if you are fit and able you can come to the hospital on the day of the surgery rather than a day before and hang about waiting
Have a pre op Assessment with the surgeon on Monday to discuss the processs and answer any questions, tell me about post op and what I should do etc.
Looking forward to it, but obviously bit scared in case there are any complications and such, and with the unexpected etc.
never had major surgery before, just little things, only been under General twice before, and never for this long as I would imagine it takes an hour or so.
Got my Op date through today.
Surgeons Secretary called and gave me the 5th of February.
They do this thing now where if you are fit and able you can come to the hospital on the day of the surgery rather than a day before and hang about waiting
Have a pre op Assessment with the surgeon on Monday to discuss the processs and answer any questions, tell me about post op and what I should do etc.
Looking forward to it, but obviously bit scared in case there are any complications and such, and with the unexpected etc.
never had major surgery before, just little things, only been under General twice before, and never for this long as I would imagine it takes an hour or so.
Cheers folks.
Well I am 31, 5' 7" and about 70kg (slimming down apparently ). Don't smoke, hardly drink and am reasonably healthy.
Not quite so fit but that's because was put off exercise after being In pain and each time having to go on roids again and piling weight back on.
So shouldn't be too bad re-recovery. Well an hour or so was a guess for op time, 2-3 hours sounds more plausible.
Hopefully get all my questions answered about what to take, what will go on, what to expect pain wise, where the cut will be etc and how to care for myself for first week home etc.
Work is happy days, as have got major audits tomorrow so should have major boxes ticked for completion before I go, did big handover with operations manager and have laptop with me at home so can do stuff after first week back (boss says I don't have too but glad I offered).
I probably wont be too nervous as I am sort of seeing this as going to give me much better quality of life, I may actually be more nervous afterwards with pain, and not being allowed to leave till been to the loo.....laxatives you say!
Well I am 31, 5' 7" and about 70kg (slimming down apparently
). Don't smoke, hardly drink and am reasonably healthy.Not quite so fit but that's because was put off exercise after being In pain and each time having to go on roids again and piling weight back on.
So shouldn't be too bad re-recovery. Well an hour or so was a guess for op time, 2-3 hours sounds more plausible.
Hopefully get all my questions answered about what to take, what will go on, what to expect pain wise, where the cut will be etc and how to care for myself for first week home etc.
Work is happy days, as have got major audits tomorrow so should have major boxes ticked for completion before I go, did big handover with operations manager and have laptop with me at home so can do stuff after first week back (boss says I don't have too but glad I offered).
I probably wont be too nervous as I am sort of seeing this as going to give me much better quality of life, I may actually be more nervous afterwards with pain, and not being allowed to leave till been to the loo.....laxatives you say!
dumfriesdave said:
No laxatives involved Rick - as a result of the operation your bowel shuts down for a few days. Everything returns to normal after a few days (think I was around 4 or days) but they will not release you till they know the bowels are functioning again.
BTW 70kg is a fine weight for someone with Crohn' s- I had a weigh-in at hospital in Dec and managed 52kg fully clothed.
When you say 'fine....you mean fat don't you :PBTW 70kg is a fine weight for someone with Crohn' s- I had a weigh-in at hospital in Dec and managed 52kg fully clothed.
Hehe, yeah I know I am better off than a mate of mine who has it, hes like a rake.
I was 63k6 but had to pile it on with roids.
So hopefully I can get back to cross training and mild weight lifting again to flatten out the stomach and put some muscle on without keeling over in pain
I was expecting about 3 days or so after the op anyway so that's not too bad.
Had my pre op meeting yesterday.
Answered all questions and was quite surprising, apart from the "These things may happen...." bit its pretty easy, right hand side is apparently simpler, less issues with major blood vessels. Plan to get me up the day after the op.
No change to diet, just eat small amounts relatively often. I was given lots of sachets of protein powder stuff to take 3 times a day for 5 days, and 3 carb powder sachets for the day before and one in the morning, basically fill me up with vitamins, and energy as I fast from midnight on the day of the op.
No pre-treatment stuff which is a relief.
Bought a massive lego starship thing from the old republic sets and 2 minicraft things, basically tiny x-wing and tie- interceptor lego sets, and a shedload of dvd's to watch, mainly sci-fi and breaking bad, as I have never seen it.
I am looking forward to it, but also scared if it goes wrong, i.e. complications, but have been told am fit and healthy so recovery should be good.
Just obviously nervous about it as never had major surgery before, and I know that dignity has to stay at the door when in hospital.
Also bit bummed that Robocop comes out while I am in hospital as quite fancy seeing it, even if it will be poo.
Phone camera scar pics will be forthcoming, along with lego build progress
Answered all questions and was quite surprising, apart from the "These things may happen...." bit its pretty easy, right hand side is apparently simpler, less issues with major blood vessels. Plan to get me up the day after the op.
No change to diet, just eat small amounts relatively often. I was given lots of sachets of protein powder stuff to take 3 times a day for 5 days, and 3 carb powder sachets for the day before and one in the morning, basically fill me up with vitamins, and energy as I fast from midnight on the day of the op.
No pre-treatment stuff which is a relief.
Bought a massive lego starship thing from the old republic sets and 2 minicraft things, basically tiny x-wing and tie- interceptor lego sets, and a shedload of dvd's to watch, mainly sci-fi and breaking bad, as I have never seen it.
I am looking forward to it, but also scared if it goes wrong, i.e. complications, but have been told am fit and healthy so recovery should be good.
Just obviously nervous about it as never had major surgery before, and I know that dignity has to stay at the door when in hospital.
Also bit bummed that Robocop comes out while I am in hospital as quite fancy seeing it, even if it will be poo.
Phone camera scar pics will be forthcoming, along with lego build progress
TBH its the whey protein shakes I have to take 3 a day of that aren't the best, I don't mind them as I took them when doing fitness training, however of all the various flavours I could get, 'Citrus' is vague enough to be worrisome and tastes a lot like what I expect milk and OJ mixed to taste like.
What was wrong with strawberry?
Ah well not long, and looking forward to hopefully being pain\wind free afterwards (as in once recovered).
What was wrong with strawberry?
Ah well not long, and looking forward to hopefully being pain\wind free afterwards (as in once recovered).
Haha, that picture was a baw hair away from inapropes 
I think I might be getting a different incision as mine is on the right hand side and I get the impression that's where they are going, may also be diagonal??
Thanks for the frank show though, lets me get a better idea what to expect.
Not long now.
I think I might be getting a different incision as mine is on the right hand side and I get the impression that's where they are going, may also be diagonal??
Thanks for the frank show though, lets me get a better idea what to expect.
Not long now.
Jam Spavlin said:
I won't put up the other failed attempts lol!
Only reason I have such a big scar is because I had actually burst and then fused back together so inside was a mess and a lot more had to come out than first thought.
Ah right, I did wonder, hopefully wont be too big so I can 'lie' on a side that hurts less while playing Forza 5 hehe.Only reason I have such a big scar is because I had actually burst and then fused back together so inside was a mess and a lot more had to come out than first thought.
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