Looking for some support

Hello HelloTonight,

The first week is tough no doubt, I remember completely regretting my decision to get the surgery during the first week while I was in hospital (mine was planned at least). Don't give up though, 3 years on for me and it is literally the best thing I did.

Her recovery experience sounds fairly similar to mine, unfortunately it will be what seems like unlimited watery output until she starts eating real food again, but you're right not to force it, it'll take a while for her guts to adjust. I was also the lightest I have ever been when I got out of hospital, it didn't last long when I realised I could eat food again without spending the rest of the day on the toilet.

Stick in there, when she gets out of hospital the recovery will pick up pace. If she can find a good hobby to keep entertained for a month or so and go out for regular (short) walks to keep active, you will be amazed how quickly she will get back to normal (or better than normal hopefully).

Remember to make friends with her Stoma nurse, it took me a few months of trial and error to get the right combination of equipment to avoid leaks. It was a bit stressful at the time, but now it’s sorted I honestly forget I’m wearing the thing most of the time.

Also, when it comes to eating real food again, remind her to chew very well, the less work the guts have to do the better.

It’s going to be tough for you too for a while, my wife was amazing and helped a lot through the recovery process. I had Colitis not Crohns but the surgery literally gave my life back, I hope she has as much success as I did.

Cheers!

Thanks, happy to hear it worked out for you. We're really hoping this gives her her life back!

HI 

Welcome to the online community and the stoma support group and I'm sorry to hear that your girlfriend needed emergency, though not totally unexpected, surgery. This is the place that you never thought you would have to join but you will find that you are pleased you did as in this group we are crowd of friendly people who have come together to give support and advice to each other.

12 days may seem such a long time to be in the hospital after this type of surgery but it has to be remembered that your girlfriend has undergone some pretty serious surgery and it can take time for the bowels, which have been pushed, shoved and stretched all over the place, to settle down but it looks as if she is getting there slowly and it may not seem like it just now the best place for her at this time is in the hospital.

When settled the average daily output is about 500 ml but it can be between 1 - 1½ litres per day so she is on the right road and will soon be down to an acceptable range and will be sent home once the nursing staff and the hospital stoma care nurses are happy that being in her home surroundings will be the best place to help her recovery, one thing you both should be aware of is although this is a serious procedure and thousands are performed annually we are all different and our recovery time is not set in stone.

Although she has lost a lot of weight which is very normal after this type of surgery, in the early days we can only eat a little but often and if she doesn't feel like eating a once liked favourite food it is not the end of the day as her taste buds will have changed, the important thing is for her to keep hydrated whilst the output is watery and still highish and the hospital will be monitoring her output against her input carefully. With high watery output her body will not be absorbing vitamins and minerals and these will be checked by the hospital but she will need to be conscious of this fact when she gets home.

Whilst in hospital she should take the opportunity to "perfect" her stoma care management which will enable her to feel confident when she gets home.

She should also look to achieving a positive attitude towards having a stoma, none of us like changing a bag but if she looks on the bag as the cure to her condition and not the cause she will soon appreciate that her life will be on the up and up very shortly and will probably find that she capable of doing a lot more with her life in the future that she has done for a longtime. After the initial recovery period of taking things easy she can gradually get back into enjoying everything in life that she was not able to do previously and there should be nothing that she should not be able to accomplish, and honestly I do mean anything.

We in this group are here to support each other daily and to give advice when needed, no matter what is troubling your girlfriend or yourself at any time or if you need to ask a question, even although you may think it is trivial, stupid or daft the easiest thing to do is ask me and I will give you the answer, I'm on site every day and here to help you at anytime you need me.

Through this part of the journey your girlfriend has just started if she remembers there is no right or wrong way to being an ostomate, we are all different and everything we do is trial and error until we find our own individual way of doing things. Changing a bag whether routine or in an emergency situation it takes as long as it takes and is not a race to the finish.

Your girlfriend will be used to watching what she eats and although she may have a different diet, different food items can have strange effects on her body and she should be ever conscious that certain foods must be avoided at all costs.

When she gets home, which won't be long now, we can start start to discuss her everyday living ranging from eating, products, clothing and the way forward including work, play, travel, going out and right down to the personal side of being an ostomate that no one wants to talk about, nothing is a taboo subject to me and if you want we can discuss things on a one to one basis using personal message by accepting my friends request.

I'm  and I live my life daily with my stoma just as your girlfriend can do so also in the future.

Please keep in touch with me and let me know how your girlfriend is getting on and if I can help in anyway, all you need to do is give me a shout out and I'll be there.

Ian

Thanks a lot Ian, the weight loss just shocked us a bit. She is eating ok for the most part, I just think it's been going straight out again. I'm trying to get her to drink her ensure drinks but she has been struggling with them a bit.

I think she will cope ok with the stoma part of things, we both knew it was a possibility for a long time. She just wants to be home.

It all depends on the type and flavour of the Ensure drinks. I found that on occasions some of the flavours I just couldn't take to and unfortunately being in hospital there is little choice and some can be very sickly, I'm assuming that she is being given the milkshake type but Ensure also do a juice type that might be easier for her to take and they seem to taste better if nice and chilled. You could also try making your own smoothie type drinks (not the ones that are already made up that you can get off the shelf.) There is also one called Fortisip that she could try, you maybe able to pick up some at your local pharmacy.

Most of the food taken will pass straight through her, once the output settles down a different diet will be introduced to help bulk up the output.

Home is definitely the best place for recovery and I'm sure you'll have her home soon and you will both see a difference in her as she gets back to piecing her life together again, just ask her to be a little bit patient for  wee while longer and let nature and the hospital take their course, rest assured that the hospital won't keep her in a minute longer than necessary.

Remember keep in touch with me don't let anything worry you I'm here to help you both, just shout out at anytime.

Ian

Friendship request has been sent.