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willsandco
18th January 2015, 10:10
Hello all,

This is my 4th day after discharge from Sheffield Royal Hallamshire Hospital which was, as always, all you could wish for! But I haven't had the energy to get dressed yet. I have got discharge (for the last two nights) coming from the PEG site, loads of bruising around it and feel like i have been kicked by a mule, particularly under the left breastbone. But the bruises are coming out now so I am hoping that is the beginning of the end of the pain! I am taking paracetamol every four hours which isn't at all like me.

I am booked for Strictly Come Dancing in Nottingham on Wednesday (a Christmas present from young daughter) Please God I am OK to go there - would be dreadfully disappointed if I couldn't make it - but wouldn't be able to go today!

It is not in my nature to moan and groan, but today I am a bit fed up! Just want to be up and running again! I just never anticipated any complications with this PIG procedure because the anaesthetist said it was copy book!

Joycie. xx.

Davec
18th January 2015, 10:52
Joycie
Try and remember you are human! Your positive attitude is inspiriting so take some time out for you!
Love
Dave xx

Trevorhb
18th January 2015, 10:55
Sorry you are feeling down Joyce, but I did explain to you that it is a shock to the system and it does take some time to get over. Do not rush things, just relax and wind down, I found it was a good 4 weeks before the soreness had gone and I felt back to normal. Like you I had a small discharge and was put on antibiotics, it soon cleared up. I did not get any bruising so do not understand that, it could be due to the different procedure. Have you got a PEG nurse who can advise on all aspects of aftercare? Mine came the day after the op and then was on call if we needed any help or advise. They tell you it is a simple procedure, which it may be to them, but to us it is quite evasive, uncomfortable and takes time to recover from. Please message me if you have any other concerns and please do not run until you can walk.
Take care, Trevor. xxx

willsandco
18th January 2015, 11:04
It is the weekend - you cant get hold of anyone, otherwise I would have got our lovely GP involved. I don't really want to have to traipse all over Lincoln to the out of hours doctors at the hospital! We have rung 111 and they advised us to ring the ward. Peter has done that. they say it is not unusual - these discharges can go on for two weeks sometimes, but I just don't feel particularly well. I never sit around in my night clothes but I just cant be bothered to get dressed. It seems to me that the site is becoming a bit puffy so I think I need some antibiotics. Peter has gone to church but when he comes back I will ask him if he will ring the out of hours doctor at Lincoln and see if we can get some antibiotics. It just doesn't feel happy to me although I am pumped up with paracetamol so perhaps the pain is dulled by that.

It is just so unlike me to sit around and mither about stuff. Normally I am attacking things head on. It is all a b.........nuisance!

But I am resting. I will raise it with Peter when he returns at 11 am

Thanks for your posts, all of you

Joycie xx

Trevorhb
18th January 2015, 11:26
I was given a comprehensive folder produced jointly by my hospital and the PEG feed company. It explains what do to for every problem, even what drawer appropriate spares are if you have to go to A & E and a 24 hour helpline to the PEG feed company. This is what we used as we found an infection, like you on a Sunday. We had call back from a PEG nurse in Norwich who advised us. Have you not been given anything like that? Our PEG nurse came out early on Monday and took a swab, this was to confirm that there was an infection and the best thing to clear it up.

willsandco
18th January 2015, 11:43
Trevor, the district nurse called in on Thursday morning but it was OK then. Then we called another one back in yesterday and she said it was normal sort of reaction. But it got worse overnight and I just feel "two shades under" today. So perhaps there is an infection. I have a comprehensive information booklet but it has no number - just says call GP. dietician or PEG nurse

we have the dietician booked in for Monday afternoon and the PEG nurse in for Tuesday afternoon. But we haven't got a phone number for either of them

Is it a national helpline you have? If so, can you just post me the number and Peter will ring them

The trouble is that it is weekend. If I was a weekday, I would just ring my local GP she would fit me in immediately, I know she would. She is just wonderful.

The only reason I am flapping is, if there is an infection, we need antibiotics to be taken sooner rather than later, don't we?

Thanks so much for your replies, all of you!


Joycie x

Trevorhb
18th January 2015, 12:04
Private message sent.

Terry
18th January 2015, 12:09
Hi Joycie;

Like Trevor says, I think it needs two weeks to see an improvement and four weeks to feel anything like normal. I was in a similar situation to you and got some antibiotics from my Doctor but they were the wrong type as the infections are of a different type.

willsandco
18th January 2015, 12:13
Oh Terry, that has cheered me up - and Trevor's replies! I had hoped it would be problem free because I am in such good health (apart from the obvious!!). Seems it is going to be a longer job than I thought! Patience, woman, patience! Love Joycie xx

Terry
18th January 2015, 12:32
Hi Joycie;

If you read my posts on :- http://forum.mndassociation.org/showthread.php?4445-The-RIG-and-breathing/page3 You should see the different antibiotics that I was prescribed. Ask Trevor what he got as well so if you push your doctor for some get one of what we had as a normal one will probably be a waste of time.

The discharge might just be some of your stomach contents. I thought that I would be OK as I am still in quite good health but my RIG site still causes me problems, leaks, sometimes smells and stings , and gets granulation.

Most PEG's are OK.

Fingers crossed, but when my stitches were removed three weeks later it did make a big difference, Terry

Trevorhb
18th January 2015, 12:36
Stitches Terry, I did not have any stitches, just a neat hole where the tube goes through.

john
18th January 2015, 12:38
Hi Joycie,
Not much to offer apart from encouragement. Irene had her PEG installed on a Monday and stayed in hospital until the Thursday. Wasn't a lot of trouble but did need medication and a lint pad for a while. No antibiotics. In the recent thread on the subject I think it was Spring suggested an ointment to apply. Might be worth trying.
Anaesthetics take it out of you and your maybe suffering a lack of enthusiasm because of that as well as all the psychological knocks this disease dishes out at every turn.
Pour a couple of sherries down the tube(that could disinfect a little) put your feet up and chill for a day or two. Paracetamol probably does nothing for energy levels either.
I am sure you will be you again when your body adjusts to its new addition.

John

Artmart
18th January 2015, 12:40
Hi Joycie

Looks as if Trevor and Terry are sorting you out:)

I was given loads of contact info when I left hospital on Tuesday and 24/7 support is provided, I think mine will be the same as Trevor's. Get this looked at and good luck, hope you feel better soon.

Arthur

john
18th January 2015, 12:47
It was Karena b. Colloidal silver she applied from day one and had no infection. Might be worth trying if you can get any on a Sunday.

John

Terry
18th January 2015, 12:50
I think there's some debate on whether that should be applied John, ask the pharmacist for advice about it.

Terry

Suzy
18th January 2015, 13:15
Hi joycie
I know what you mean, I had my peg fitted bout 2 month ago and still get some discharge. As long as it's kept clean no worries. Enjoy strictly u deserve it xx

DaiTheDragon
18th January 2015, 13:22
Hi Joicie.
Not every one is the same. Some people recover in a couple of days, others a couple weeks or even months. I think what you are describing is quite normal. I had my rig May last year, I think and I still get seepage every night. It's the stomached contents. I have many swabs taken to check but no infection so far. It still stings occasionaly and can be a bit painful, especially when my cat has been sleeping on my chest.
I don't think you should worry too much but phone your GP to put your mind at rest
David

Springtime
18th January 2015, 13:24
Hi Joycie,
Have only now seen your post. All good advice given to you from MND family, so can't add anything. But, Lovely Lady you are so strong and so independant remember Joycie you have had an op, and your body has taken a battering. Relax, sleep as much as you can and enjoy the rest. Consider it time to recharge your batteries ready for your next tour. Many many hugs to you and Peter. xxxxx

Trevorhb
18th January 2015, 13:28
The doctor who carried out my procedure explained it is very important to match the size of the hole with the tube, too loose and it will leak, too tight and it is difficult to turn. Thankfully mine has healed nicely with no leakage.

Ellie
18th January 2015, 13:46
Joycie, rest, rest and then rest some more. It takes time and I know that you are not for sitting still but your body needs to recover.
If you can get a swab, do. If you have an infection, you wll be given a targeted antibiotic, rather than a broad spectrum one.
Ellie x

ccinjersey
18th January 2015, 14:00
Your ready to rock and roll already Joycie ?!! lol :) Patience indeed woman it's only four days.

Remember it's never routine when your the patient. Give youself some recovery time, slow and steady you'll get there :)


Some cheer:

Jerry was in the hospital recovering from surgery when a nurse asks him how he is feeling.

“I’m OK but I didn’t like the four-letter-word the doctor used in surgery,” he answered.

“What did he say,” asked the nurse.

“OOPS"


XOXOXO :)

Trevorhb
18th January 2015, 14:04
Lovely! 😀

willsandco
18th January 2015, 14:47
that is really funny, CC! Peter has rung 111 and the staff there are going to send a nurse around with some antibiotics. I cant get to the other side of Lincoln today - have got the transport but not the energy! The nurse will have a look and see what she thinks. I think it is infected, it has got really puffy overnight above the wound. Antibiotics will be a placebo is nothing else. I cant believe I have been affected like this because I am always so upbeat but it is right what you all say - the procedure will have taken its toll of me! I am strong, but not that strong perhaps! Thanks, everyone, for your posts. xx Joycie

Davec
18th January 2015, 16:04
Made me smile cc! Thank you xxx

willsandco
18th January 2015, 16:40
The emergency out of hours GP has come out with the nurse which is so kind of them, because I couldn't have got in the car to see them! They say it is not infected, just discharge from the "gap" that is left by the procedure, which will close itself eventually. He has prescribed some 7 x 8 dressings and Peter is off to Sainsburys to collect them. We cant fault NHS today, can we?

I am just a tad dispirited today because I expect things to go so well - but thank you so much, guys and gals for your advices, your encouragement and your kind words. (I am in a even more anxious state because Pippa and I are due at Nottingham in 72 hours for the Strictly Come dancing road show - please God I can make that, dressings and all!) Love to all Joycie xx

Nettie B
18th January 2015, 16:47
Yes. Oops is the last thing you want to hear isn't it? That was great CC.
Everyone is right. Any surgery takes it out of you. Added to that, pain takes it out of you and not forgetting the psychological aspect of having to have a PEG, PIG, RIG or any other type of feeding tube. Just take it gently Joycie. You were flat out for weeks before the op and you'll be flat out again before long. That's just you, isn't it. Maybe you might need to let your body tell you when you're ready to boogie! You won't miss the signs Joycie!

willsandco
18th January 2015, 16:55
Thanks, Nettie. A stalwart, as always! Much love Joycie xx

Terry
18th January 2015, 17:00
I use a foam dressing, it is supper absorbent and does not leave any cloth residue. It's called lyofoam Max.

willsandco
18th January 2015, 17:09
Thanks Terry. Peter is out in the car combing Lincoln for an open pharmacist. He is so, so good to me! Love Joycie x

Terry
18th January 2015, 17:53
Things always happen Friday or Saturday evening when you can't see or get anything. I was told thast if it can out or there was a problem with it to go to A&E with a spare tube. I went and no one there at the week end knew much about feeding tubes.

Trevor;

They were going to put two stitches either side to hold the stomach inline and closer to the site. They put one in and it pulled and produced even more pain. Such fun, it's so nice to go in hospital feeling fine and then to feel so bad after. Even though I still don't use it it is nice to have it in reserve.

Terry

Nettie B
18th January 2015, 18:23
Joycie. Just had a thought. At first, Trevor couldn't get comfortable in bed or on the chair. We came out of hospital without the cocodymol that they prescribed as it would have taken another three hours for it to get it dispensed at the hospital wnd we just wanted to go home! We thought we could get some from the local pharmacy but could only get a lower dose!
Anyhow after a few days he decided to treat himself to a rise and recline chair. Buying one that was on display meant he could have it de!ivered in a couple of days. It helped him so much ... Now I can't get him and the cat out of it!
If you haven't got one, I can assure you that it could change your life! X Nettie.

GrannieAnnie
18th January 2015, 18:38
Joycie am sending a private message. Ann

willsandco
18th January 2015, 18:41
I think you are right Nettie. It is just this lounge is simply choc a bloc. I have a lovely reclining leather chair here that Bill had but it is not a rise and recline chair. I know I perhaps need one. I can sit on our settee on one end and can get out of it, but not the other end! But the best thing at Sheffield was the hospital bed - how much I enjoyed pressing those buttons to move me around. It is all something to think about! Thanks for the thought, Nettie! Love Joycie x

Davec
18th January 2015, 19:36
I love playing with Sharyns hospital bed, a simple pleasure but mine own xxx

Artmart
19th January 2015, 17:55
Hi Joycie

How are you today, any improvement?

As discussed off-thread with Joycie can I just let anyone following this thread, and who may now but put off having a feeding tube fitted, that it can also go well with few problems. I had mine fitted by RIG procedure on the same day as Joycie and I must have been lucky; minimal pain, no swelling, no leakage and I'm feeding through the tube with no problems. I'm moving about as before the operation and I'm feeling ok. The stitches are pulling a bit, but that's to be expected, but they come out next Monday so I'm looking forward to that.

Hope this helps those awaiting the operation to consider a balanced view. We are all different so reactions and progress will vary.

Arthur

willsandco
19th January 2015, 17:59
Yes, thanks for posting that, Arthur. I know there are lots of us who have had no problems with it. Just the luck of the draw, isn't it?
Much love Joycie xx

Alig2014
19th January 2015, 18:13
Joyce if you already have a recliner you could maybe look into a lift assist cushion that goes on top. Think it has a spring mechanism that gives you an extra push.

Hope your feeling better.

Alison x

Terry
19th January 2015, 18:36
Sounds like a nice job for Zepedee!!!!! Alison;

willsandco
19th January 2015, 19:00
yes, that is a good idea, Alison. Will be a good idea to bounce up and down on that! I really do have trouble getting out of settees and chairs nowadays.

On the medical front, the peg site is still discharging. The dietician came today and thought it was infected. So Peter rang GP and he has prescribed antibiotics So we are on the move with taking them (and the paracetamol) and I am gearing up for Wednesday afternoon at Strictly Come Dancing in Nottingham Peter say he will drive us to the door and drop us off and pick us up afterwards. Just hope I feel up to it!

But, like Arthur says, most of these procedures go really well no complications

- and we will soon get rid of all this and be out rocking and rolling again.

Much love

Joycie

Terry
19th January 2015, 19:14
Really sounds like you will benefit from a rise and recline chair Joycie;

Get your OT to come around and measure you up and see if the Mnda will lend you one. You're just have to keep it outside if there's not enough room in your lounge. I'am sure hubby will take a few electric fires out for you and I can lend you a big tent.

Hope you can get to |Nottingham and have a good night and can strut the boards, love Terry

Alig2014
19th January 2015, 19:21
I'm sure you will be fine if you just take your time. A night out will do you good. But no dancing for you.

Yes Terry haha.


Alison xx

willsandco
19th January 2015, 19:21
you are right, Terry. And I perhaps could do with a hospital bed because I just cant manoeuvre myself around these days. Space is of the essence but I might be asking you for the loan of the tent. Might wait for warmer weather though, eh?

x

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