Recovery time

[persephone300]

I met with the Gastro and have said yes to surgery for my crohns, so awaiting on a date now.

I'm just wondering what your experiences are of recovery times - especially those in Uk - with the NHS system etc.

I'll be having a full colectomy - it's planned - so there are no complications going in (can't know that there won't be under).

How long do you stay on the ward, and how long roughly off work?

My job is varied - I travel to different offices, but also can spend a lot of time at my desk/sat down in meetings. And I assume, that I'd have a phased return so can go back just a few hours a day to start with etc - which should help with fatigue etc and returning to work.

Also, I assume the stoma nurse comes and explains everything after it's done, the equipment etc, that's not been done yet :s

 

[Misty-Eyed]

Hi Persephone,

Are you having open or laproscopic surgery? I had mine done laproscopically back in October. I was in hospital for 6 days although I could of gone home earlier if I would of been able to see after they took out the catheter for the first time! Had to have it put back in for a day or two.

After that I was in quite a bit of pain for a good couple of weeks and couldn't see myself going back to work any time soon, but then suddenly I felt loads better. I started work again after 5 weeks but was working from home for maybe a week or so until I started going back into work for a few hours and building it up.

If you have a while to spare though, you can read my thread which details what happened a bit more! http://www.crohnsforum.com/showthread.php?t=23535

Also check out the stoma forum if you haven't already! I had a meeting with my stoma nurse before my op and then while in hospital they show you how to change your bag etc. They won't let you leave until they know you can deal with it all on your own

 

[persephone300]

Thanks Misty. I'm not sure how the op will be...I'm awaiting my next appointment with the surgeon to discuss this, and the flexi-syg to prove I've not got infections before they schedule me in. Catheter for wee? Sounds unpleasant.

 

[Misty-Eyed]

Well good luck and keep us updated!

Haha it does sound unpleasant but it's the norm for this kind of operation. Plus it's actually amazing at the time. You don't have to worry about going to the loo and you have no urges from anywhere to go to the loo either! Also, they put it in when you're under and you can't feel it when it's in. It's not so bad at all.

 

[persephone300]

sigh, don't like the idea of being fiddled with when I'm asleep or awake :S, or losing control of anything. Hmm

 

[Hobbes650]

Hi Persephone!

Over here, the "stoma nurse" is a good resource, but not always the best. Yes, you will learn how to take care of your appliance but there are LOTS of appliances available and some will work for you better than others. I've had mine for over 20 years and here is a couple of points I learned on my own:

1) I used some paper tape over the clip to provide a better grip. When I first had mine, the box of 10 pouches I used came with just two clips, and they got weak and slipped off so when I have any doubt, I reinforce with some paper tape.

2) you should get more than just 2-3 days of wear time before putting on a new appliance. There are barriers you can put on over the stoma (there is a hole in the middle for the stoma to fit through), and then put the pouch on. These greatly help to protect the skin and increase wear time. Keeping the skin protected is key.

3) If the skin does get irritated, there are special creams and powders that help.

Your new best friend will be an ostomy specialist at a retailer of ostomy supplies. They can send you free samples of two or one piece appliances for you to try. Everyone has their preference. I like to change things up every once in a while and new products do keep showing up for me to try. Some are good, others just a waste of money.

As for recovery, it all depends on how quickly your bowel starts to make sounds and you're eating again. Usually that happens pretty quick. After surgery you probably won't sleep very long since nurses routinely come in to check stats, empty your pouch, etc. Pain meds are very good and you may not need them for very long. Getting up to walk is important as it will stimulate bowel activity, but if you can't you need to speak up. I could walk just a few steps the next day after surgery, but not the day after- I was orthostatic and kept getting dizzy due to coming down off the meds too quickly. This issue extended my stay about an extra week. That's not a common reaction, but point is you can't really plan. Lastly, you'll probably have some tubes in you to collect your waste and probably one down your throat (ng tube). Ng tube comes out after a few days, so the first few days you kinda feel wierd with all the stuff hooked up.

When you do go home, take it easy and get your strength back. You'll find that some days you push yourself too much and the next day you need to rest. That's normal.

You will feel SO much better soon! You're diet should not be as restrictive as now, but you will want to watch the ruffage- don't want anything clogging the pipes, especially right after surgery. I usually empty my pouch about 6-8 times a day but remember, I'm not incontinent so I know when I need to empty it. Sometimes I get up during the night to do so, but only if I eat late. Even though I empty the pouch often, it doesn't take long to do so- thus, I don't get nearly as much reading done anymore.

Wishing you a speedy recovery!
Hobbes

 

[2thFairy]

I was in the hospital for 12 days. I did have issues with ileus and that took a little longer to get me up and out of the hospital. After being home, I took 2 more weeks off from work before resuming half days. From there out, it was just a matter of getting stronger a day at a time.

I will have to disagree with you, Hobbes, on the length of time betwen changing bags. Everyone is different and each bag is manufactured a bit differently. I have to change bags every other day to avoid skin breakdown. My ileostomy itself, not the output, breaks down the flange quickly, no matter what kind of bag I use. Currently I am using a bag that is designed for long term wear and I still need to change it every other day.

 

[skippy111]

If it is really hot outside, and I am out someplace, I bring an extra flange and a fresh bag. I have a kit I take that has 4x4's wipes, the powder, lubricating deodorant, etc..

When I sweat, sometimes the flange looses it's adheasiveness even tho I use the powder and the paste.. ive even had the bag and the flange fall down the side of my pantsleg and the bag wasn't even 1/3 of the way full..

 

[persephone300]

Thanks for all this.

Excuse my ignorance Hobbes - but what is the difference between being incontinent and continent when one has a colostomy bag?

 

[Hobbes650]

Sure. But first let me clear up some terminology so we're on the same page.
A Colostomy means your colon is emptying into a bag. If your entire colon is removed then your small intestine (ileum) is what empties into the bag, and that is called an ileostomy. Same function, but care for them is different. Output from a colostomy is thicker, and I believe you have to irrigate (add water) to the pouch in order to get everything out. Output from an ileostomy is much thinner, so it comes out easily. As a result though, ileostomy bags can leak if not secured to the skin properly. Ileostomy bags need to be emptied out more frequently.

Continence means your ability to control your waste. With a bag, you will be continent. That is, your bag will fill up on its own throughout the day and when it's full, you go empty it out. Incontinent is when you have no control and run to the bathroom hoping not to soil yourself. With a bag, incontinence is never an issue.

Lastly, you may hear the term "continent ileostomy". This refers to an internal pouch which is reconnected so it empties through your behind just as before. Very confusing term.

Hope that helps,
Hobbes

 

[JMC]

I am in the UK, but had surgery privately not on the NHS. I had a right hemicolectomy through an open procedure and had a temporary ileostomy. I was in hospital for just under 7 days and for the first 5 days felt I was in need of hospital care. After 6 days I asked to go home because the food was pretty poor and I struggled with appetite. When I went home on day 7, I was still quite weak, but my strength came back quite quickly as soon as I started eating properly again.

I was off work for 5 weeks in total. After about 3 weeks I was able to do some work from home on a laptop. After 4 weeks I felt ready to go back, but took an extra week because I could.

 

[persephone300]

Thanks forall your help on this. I'm hoping that I won't have to be off work too long - only been in the job since March - and can't afford to take too long out!

 

[Hobbes650]

Hi 2th Fairy!

No problems. I will soon start a thread in a better section where ileostomy bag wearers can share their wear time stories- may get some good info out of it.

Every other day of replacing the bag is extreme. I used to be that way too, for many years. Finally though, I started asking around and very product manufacturer I spoke with said I should be able to wear the appliance longer than 1-2 days. I know everyone is different, but Im sure these manufacturers would probably tell you the same thing.

The key is keeping the skin underneath clean and dry, and protected. If done so properly, you should be able to get at lest 3 days. I always get around 7 days before needing to change appliances, and I am very active. When I first started using pouches, I put stomahesive paste around the opening, and attached the pouch over my stoma. Now I don't use paste at all. Instead I use a large Eakin Seal (I believe its the 4 inch size) and place that around the stoma first. Then I attach pouch over the stoma, on top of the Eakin seal (I also like the ones Coloplast make). Lastly, I take a little paper tape and fasten that around the edges of the seal to get a tight fit. I have just about tripled my wear time, and since none of these products are covered by my insurance I am saving quite a bit of money every year. There are also some protective wipes you can use if you don't like the seals, and they will provide better protection than just the bag and paste.

It's easy to get set in our ways with this stuff. Set it and forget it, so to speak. But I like to mix things up every once in a while. When I finished college and started working, changing appliances every other day or two was really hard financially- back then internet search engines were just starting so I was forced to use local retail shops near my home (still the most expensive way to buy). Now though, online stores are everywhere, easy to use and full of information. Some people really like two piece systems, and that's another good option to increase wear time. I don't like the largeness of them, but to each their own.

Another reason for short wear time could be the stoma short and you are using a non convex pouch. Took me a while to learn that, but now that I use a convex pouch I am much less likely to get leaks underneath. Either way, a good specialist at any ostomy retailer will ask you lots of questions to see what's going on and be able to make a recommendation and send you samples. Trust me, EVERY manufacturer wants to help you get more weartime than 1-2 days, and that's a reasonalbe expectation to have. Save your money and take that trip you deserve instead!

Hobbes

I was in the hospital for 12 days. I did have issues with ileus and that took a little longer to get me up and out of the hospital. After being home, I took 2 more weeks off from work before resuming half days. From there out, it was just a matter of getting stronger a day at a time.

I will have to disagree with you, Hobbes, on the length of time betwen changing bags. Everyone is different and each bag is manufactured a bit differently. I have to change bags every other day to avoid skin breakdown. My ileostomy itself, not the output, breaks down the flange quickly, no matter what kind of bag I use. Currently I am using a bag that is designed for long term wear and I still need to change it every other day.

 

[2thFairy]

I don't have leaks on the outside of the bag and my stoma is long enough that I don't need a convex wafer, I just have a very VERY wet intestinal stoma. My stoma nurse is the one that told me to change more often, not the manufacturer, as the intestinal fluid, the stuff that is naturally produced that keeps the intestine wet, not the waste output, was eating away at the flange. I do use Coloplast strip paste that is similar to the Eakin seal and it has saved my skin.

There are other threads already where we have all discussed our methods and wear time. I am not the only one who needs to change this often.

I am only wanting to point out that everyone is different and depending on skin pH, gastric fluid, diet, what type of bag you are using, etc., makes the wear time extremely variable from person to person.

 

[persephone300]

It's all going over my heaqd to be honest, the equipment etc, until I see the stoma nurse again. I saw them briefly a year ago when surgery was first mentioned, but not since. I'm sure once I've spoken to them, seen all the equipment etc, things will make more sense, but just "reading" it off the screen makes it all sound a bit flabhergasting

 

[Misty-Eyed]

Hi Persephone, not supreme it's all going over your head! Some of it still goes over my head, talk of pastes etc. Don't worry about appliance talk for now.. It will all make more sense later on. Your stoma nurse will talk to you about life ith a bag etc inane your concerns at your appointment before the surgery. Then after a surgery they'll teach you how to look after your stoma and how to change your bag. It'll probably be a few months until you feel like experimenting with different types of bags etc.

In regards to time off, I was worried about it too. I started my job in feb and within 2 weeks I was in hospital for a week and then found out about this op! Not a good start but my employer was/is very sympathetic. In a few months after the op you'll be feeling a lot more like yourself and the whole thing will be so worth it. I never have to worry about being ill with my crohn's now!

 

[skippy111]

Sure. But first let me clear up some terminology so we're on the same page.
A Colostomy means your colon is emptying into a bag. If your entire colon is removed then your small intestine (ileum) is what empties into the bag, and that is called an ileostomy. Same function, but care for them is different. Output from a colostomy is thicker, and I believe you have to irrigate (add water) to the pouch in order to get everything out.

the adapt lubricating deodorizing gel helps when the stool is thick, you don't need to use as much water ... the stool falls down the bag easier...