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Suzy77 Part of the furniture
Number of posts : 488 Registration date : 2012-08-28
| Subject: Re: So many complications Sun 02 Nov 2014, 7:46 pm | |
| Hi Jules and everyone, I have surgery tomorrow pm and hoping it goes well. I'll update as soon as in able to. I have been warned it will be tricky due to the amount of scar tissue I have. I was asked to decide on whether to have a new tummy tube put in during the op or opt to live on nasal feeding tubes for the foreseeable future. THE tummy tube has never been stable and the anxiety alone from worrying it was leaking,septic and falling out all the time not to mention the painful fortnightly stitching is just too much. So nose tubes it is. I am trying very hard to drink nutrition in the hope that one day I can live on a high cal liquid diet and no tube in time for my charity event in July. It's a tough goal but im feeling pretty determined right now after lying here for for weeks so far.
Thanks as always for the kind messages. Hope you all have a good week. Xx | |
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bluebags Top Poster
Number of posts : 2204 Age : 67 Location : Sutherland Shire Registration date : 2013-01-21
| Subject: Re: So many complications Thu 30 Oct 2014, 7:01 am | |
| Arrhh maybe the cup may send some good luck your way you could be the days winner. As you know I don't know much as far as medical stuff goes but I am hoping some of the nurses on site may be able to shed some light for you. I can only say that if the Dr believes he can place it in a better comfortable position you may have to give it another try. Maybe they can come up with a way for you to sleep so it doesn't get knocked loose again I am thinking some kind of body cushion to keep you in the same position during the night. I know it doesn't sound too comfortable but its a thought. You have had to put up with so much sleeping in a confined way is probably not as bad as some of the things you put up with.
I hope what ever decision is made it helps and that you get out of hospital sooner rather then later.
Sending you love and kisses Julie and Tony | |
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Maryle Newbie
Number of posts : 139 Location : Brisbane Registration date : 2014-08-28
| Subject: Re: So many complications Thu 30 Oct 2014, 1:48 am | |
| I'm sorry to hear you are still unwell. I can't offer any advice as I don't know your situation.
I just wanted to wish you well for surgery. What a day to choose...Will it be during the running of the Melbourne Cup? | |
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Suzy77 Part of the furniture
Number of posts : 488 Age : 46 Location : Brisbane Registration date : 2012-08-28
| Subject: Re: So many complications Wed 29 Oct 2014, 9:14 pm | |
| Brief update...still in hospital...today is day 24 and surgery is booked for Tuesday pm 4th November. I'm scared but the pain is getting worse and I don't have a choice, I have also been asked to make a decision for another surgical Jtube to my gut, or continue on with nasal tubes indefinitely whilst I try my hardest to live on a liquid diet.
I would welcome your views and opinions.
Thank you Xx | |
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bluebags Top Poster
Number of posts : 2204 Age : 67 Location : Sutherland Shire Registration date : 2013-01-21
| Subject: Re: So many complications Wed 22 Oct 2014, 1:57 am | |
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Suzy77 Part of the furniture
Number of posts : 488 Age : 46 Location : Brisbane Registration date : 2012-08-28
| Subject: Re: So many complications Tue 21 Oct 2014, 12:42 am | |
| Thanks guys....am still here in hospital...I worked out today is my 147th day in hospital in 2 years.....still don't know what's happenning....still in lots of pain. Getting more and more depressed by the minute. I want this nightmare to end now. It's been over two years and I need a break. | |
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bluebags Top Poster
Number of posts : 2204 Age : 67 Location : Sutherland Shire Registration date : 2013-01-21
| Subject: Re: So many complications Sun 19 Oct 2014, 9:17 am | |
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Garfield99 Part of the furniture
Number of posts : 416 Location : Australia Registration date : 2012-02-15
| Subject: Re: So many complications Thu 16 Oct 2014, 8:26 am | |
| Thinking of you and sending virtual hugs | |
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Suzy77 Part of the furniture
Number of posts : 488 Age : 46 Location : Brisbane Registration date : 2012-08-28
| Subject: Re: So many complications Thu 16 Oct 2014, 6:33 am | |
| I'm still in hospital. Today is day 11 of my 21st admission. Ct scan was abnormal but I'm so high risk I've been going through a myriad of other tests before surgery can be done for my pain. Tomorrow will be my 27th endoscopy. My nj tube clogged so I've had three days without feed and weight is dropping so as hard as I've been trying, I need a new one putting in tomorrow as an insurance policy only. I am doing everything I can to tolerate the pain and nausea (and dreadful acid reflux) that comes with trying to eat, or rather drink, fluids. Based on the outcomes of that endo (it's a special deep one) a decision will be made. I've been frantic with worry about work but not only have they agreed to keep paying me because in their words I need to worry about my health not finances at this stage, but they have also given me a very sizeable bonus to help me financially as they know I'm struggling. I don't know how ill ever thank them enough.
I didn't get to Sydney and was devastated. Yet another plan ruined by this damn stomach of mine.
Keeping messages short as don't want my surgeon getting attacked again for helping me. I'm no naive dummy and just need these absolutely debilitating pain attacks to go and need to ensure we try everything. My biggest fear is it will get worse and lead to something horrible happenning. I'm well aware no surgery outcome is guaranteed but I have to keep trying.....I have to keep hoping I get my life back as best possible. I know things will never be what I originally dreamed they would be but I have to be hopeful that I will get a quality of life and some of those hopes realised, and soon. It can't go on, it's been over two years now.
Thank you to all who have messaged me,
Xx | |
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bluebags Top Poster
Number of posts : 2204 Age : 67 Location : Sutherland Shire Registration date : 2013-01-21
| Subject: Re: So many complications Sun 05 Oct 2014, 11:53 pm | |
| I can only hope that they manage to sort something out for you pain wise. I wish they could find a place in your body that this damned tube could be secured strong enough to do its job but comfortable enough for it to be bearable. This has been a unbelievable nightmare it makes me so upset and angry to think of you suffering for so long. Try not to worry about anything other then getting yourself right. Trips conferences and yes work they pale into insignificance to good health so everything is crossed that in the coming days you will get relief.
Good luck all my love
Julie | |
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Suzy77 Part of the furniture
Number of posts : 488 Age : 46 Location : Brisbane Registration date : 2012-08-28
| Subject: Re: So many complications Sun 05 Oct 2014, 5:51 am | |
| I know I keep saying I won't post but it really is easier than contacting individually.
I'm back in hospital. I had terrible pain during my work conference overseas and managed less than half of it before making a decision to fly home a day early terribly disappointed and very uncomfortable. Then to make matters worse, the feeding tube fell out the night before I left. I tried so hard to get it back in, managed only a few cms and retaped it. Next morning, blood everywhere. I've kept it in barely and then had a nightmare of errors flying home but landed this morning and am now back in my usual spot in hospital on a drip for the dehydration and will find out tomorrow or Tuesday what the next steps are. I didn't feel right before I went but my medical team bought the break was good for me and said nothing would go wrong....I knew it wasn't right but was too much of an emotional wreck to communicate clearly.
I am hopeful of still coming to Sydney end of the week but I have no idea. If it's surgery, well that would likely now not happen. I just want this pain fixed and a stable feeding tube, we are now past the two year mark of this hell.
Yes Jules I did see a pain specialist a few times, he was helpful but everything aside the nerve blockers failed. The nerve blockers worked but only for a few days and I'm not able to have the spinal sit halter thingy due to my predisposition for complications and my weak immune system.
Thanks to all for the messages of support Xx | |
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bluebags Top Poster
Number of posts : 2204 Age : 67 Location : Sutherland Shire Registration date : 2013-01-21
| Subject: Re: So many complications Fri 19 Sep 2014, 11:29 am | |
| Did you ever give the pain clinic a go I know you thought it was like giving up but maybe its another thought now. Is the bigger tube so it feeds faster or just to help it stay in place better whatever the reason I hope it works better once it settles. Its a pity they don't have a hospice sort of place where you could go for care and rest they are less like hospitals and usually have some kind of garden to get outside I suppose not as if they did they would have sent your mate he wouldn't have had to stay in hospital all those months. My Mum went to one after she had her knee done but it was run by the veterans affairs it had massive gardens she needed constant physio.
When you come down for the WLS get together try not to book yourself up with to many things and just chill out it really sounds like you need a real break from home work hospital just me time. Not so easy to do when money is tight but a short rest break can sometimes really help to just clear the head away from the ordinary and mundane. | |
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Suzy77 Part of the furniture
Number of posts : 488 Age : 46 Location : Brisbane Registration date : 2012-08-28
| Subject: Re: So many complications Fri 19 Sep 2014, 10:27 am | |
| Just got home. No surgery and a new bigger tube is now in. Was very painful and I feel dreadful. It was recommended I stay tonight but I just couldn't bear it and insisted on leaving. Despair is right tho Jules and I've basically screamed the hospital down all afternoon. I just can't do this anymore. I've had enough. I am so tired of all of it. I don't know what to do anymore. | |
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bluebags Top Poster
Number of posts : 2204 Age : 67 Location : Sutherland Shire Registration date : 2013-01-21
| Subject: Re: So many complications Fri 19 Sep 2014, 3:47 am | |
| Its hard to fathom the depth of your despair but who could possibly ever understand just how much you have had to bare these last couple of years. I thought the prize and the trek may have been the beginning of positive changes and who knows they may still be I can only wish that for you. Hopefully you won't need another operation but whatever happens I hope it will mean some relief for you.
As usual fingers and toes crossed sending good vibes and lots of love
Julie and Tony | |
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Suzy77 Part of the furniture
Number of posts : 488 Age : 46 Location : Brisbane Registration date : 2012-08-28
| Subject: Re: So many complications Thu 18 Sep 2014, 6:00 am | |
| I will keep my update short for the reasons I outlined in my original post but I've been unwell again and being admitted tomorrow. Hopefully I won't need surgery but I will find out tomorrow. Thanks to all who support me. It's two years of hell now and I am beyond fed up. I just want some peace. | |
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bluebags Top Poster
Number of posts : 2204 Age : 67 Location : Sutherland Shire Registration date : 2013-01-21
| Subject: Re: So many complications Thu 11 Sep 2014, 1:11 am | |
| Go one they are so damned expensive yep it must be a sign. | |
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WondaWendy Top Poster
Number of posts : 1258 Age : 53 Location : Redlands, Brisbane Registration date : 2014-04-08
| Subject: Re: So many complications Wed 10 Sep 2014, 7:53 am | |
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Suzy77 Part of the furniture
Number of posts : 488 Age : 46 Location : Brisbane Registration date : 2012-08-28
| Subject: Re: So many complications Wed 10 Sep 2014, 7:25 am | |
| Just a brief update about something funny for a change....yes still in pain (actually am in absolute gut agony today), still on the tube which is playing up, but sometimes there is a little ray of light....
Last week I won a competition! It's so funny.....I always enter competitions but to win this one.....well it's ironic....I won a $1200 vitamix blender!
It's gorgeous and huge and well, hopefully it's a sign from the universe that one day even if it's liquid, I might eat again.....what a most perfect prize there could ever be for someone like me....
Xx | |
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Suzy77 Part of the furniture
Number of posts : 488 Age : 46 Location : Brisbane Registration date : 2012-08-28
| Subject: Re: So many complications Sat 30 Aug 2014, 11:05 pm | |
| Thanks guys....
Here is my fundraising page. If anyone can donate big or small I would be so grateful. Pls note I have always kept my name confidential and ask any supporters in this group please continue to do so.
http://turiasincatrailchallenge.gofundraise.com.au/page/RotheryS
Thank you all so much
Xxx | |
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sassyjane Part of the furniture
Number of posts : 557 Age : 69 Location : Albany Registration date : 2012-11-04
| Subject: Re: So many complications Sat 30 Aug 2014, 12:59 pm | |
| Hi Suzy,I have not been on here for quite a while,I am so glad to see you are slowly improving and have gained a little weight,take one tiny step at a time darling. What a brilliant trip to do and will take your mind off many other issues,an exciting thing to prepare for and do lots of research on,you go for it,something not to miss for sure.it may be tiring but it will be an immense achievement for you mentally as well after all you have been through.do film or record it in some way so you always have something to look back on and you will be so proud of yourself,not many can turn around and say that they have done that,especially after all the hurdles and uphill climbs you have had. I really hope this is a positive mission for you and helps your recovery. Sassy | |
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Toran Part of the furniture
Number of posts : 413 Age : 62 Location : Australia Registration date : 2014-01-21
| Subject: Re: So many complications Tue 19 Aug 2014, 11:00 am | |
| what an incredible opportunity Suzy it sounds fantastic anything can happens in 12 months think positive. Hope you are feeling much better soon.
Hugs | |
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Suzy77 Part of the furniture
Number of posts : 488 Age : 46 Location : Brisbane Registration date : 2012-08-28
| Subject: Re: So many complications Mon 18 Aug 2014, 10:30 am | |
| It's been a while since I've been on here and I'm very touched as always by the kind words that are spoken here to me. Honestly sometimes when I'm in my darkest days I look here and see so much love and support. I am eternally grateful. I don't think my words are ever enough to say how thankful I am....you guys need to know you make a difference!
Well a brief update.....still tube fed of course, still in pain, but my weight is back over the magic 50kgs after ALOT of work. I'm trying to keep it there. It's not quite at 51 but it's good to see a 5 at the start.....
I've been pretty down and ended up pulling back at work again plus took a few weeks off. I then had one of the most inspirational moments of my life and I'm sharing that here because it's been the catalyst for some pretty big things. It was one of those days when I want to run in front of a bus, nothing going right and just fed up with everything but I got an email outlining a motivational talk in the city by Turia Pitt who is the incredible girl who is known for being burned in the Wa ultra run. I went on a whim and I had a chance to talk with her and well to cut a long story short, I am seriously thinking about going on a charity trek to Peru with her next year!! I obviously have a lot of obstacles to overcome and will likely still be on the tube but my doctor has said it's ok as a year to prep. A lot of fundraising required so I'll be hitting everyone on here up please! But since having this opportunity to go with her I've had a lot of messages from the universe.......a good friend raised some money with a challenge to send me to a day spa to cheer me up. I didn't want her too but she insisted. Well I forgot all about it for six months and the day after I saw Turia she messaged me and said she raised an incredible $700!!!!! Well, the deposit for the trip is......$700!!!! A message from above??it still makes me teary every time I think about it!
Since then a couple of other things have happenned too.....I plan to share some of this with this forum soon as I need all of your help and I've learned some amazing things that I think will interest all of you.
So.....I'm going to take it slow but I hope to come back on here and I hope that nosey surgeons or other busybodies keep out of what I write here which is intended as therapy for me, support and education for others, and a safe place to turn basically. I don't want to hear any of what I've written has been raised to any member of my medical team again!!
Jules....ill message you in return to your email separately.
So Stay posted guys......it may not be miracles (oh and the surgeon is considering a new procedure but that means....hope at least, he promises he will never give up) but I'm hoping to find some peace and progress at least emotionally if not physically.
Thank you all for sticking by me
Suzy Xxx | |
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Jarrah Part of the furniture
Number of posts : 911 Age : 53 Location : Melbourne Registration date : 2013-02-13
| Subject: Re: So many complications Sun 03 Aug 2014, 10:17 am | |
| You're often in my thought Suzy and have been an inspiration to my on my journey. Thank you for sharing your trials with us and know that so many of us regularly send all the good vibes and energy that we can muster your way. Take care and I hope that your tenacious persistence with bring relief and results eventually. J | |
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Guest Guest
| Subject: Re: So many complications Wed 16 Jul 2014, 9:54 am | |
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lin1970 Top Poster
Number of posts : 3316 Age : 53 Location : SA Registration date : 2011-11-18
| Subject: Re: So many complications Wed 16 Jul 2014, 9:26 am | |
| Ultimately, we need a few friends we can count on through thick and thin. Support groups are great but sometimes one doesn't work or fit a person. We shouldn't be negative and as they say 'if you cant say something nice, don't say anything at all'.
Eric used too say 'if it isn't going to make a difference then don't bother'. He helped me realise that sometimes you can something till you are blue in the face and someone wont get it, its ok. Keep focused on yourself and others that stand by you, blow the others away.
As with life, WLS is an individual journey. Some breeze through will no complications or incidence and then there is the other side of the coin, like our Suzy. We need to think about this when commenting on what we all say.
Hoping this makes sense. | |
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Guest Guest
| Subject: Re: So many complications Wed 16 Jul 2014, 9:07 am | |
| Thanks bluebags. It seems people can be a bit zealous about any wls :) |
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| Subject: Re: So many complications | |
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