So many complications

First topic message reminder :

Hi everyone, 

Some of you know the thread I started in this section because I've experienced so many problems post sleeve I wanted to share my story as some who know me feel it helpful and indeed I had lots of incredibly positive feedback. I just had it deleted.

Sadly again yesterday I discovered sharing my story yesterday publically left interpretation wide open and the one thing I can never have happen is anyone criticise my surgeon or indeed any one of my medical team from dietician to psychologist to gp or the great team in my surgeons office who are always so kind to me.

I have never said anything negative, only wonderful about my medical team as I firmly believe my situation is bad luck and that is all. But I guess other surgeons need their egos boosting so read this site and then decide to question my surgeon. I'm devastated. I am just lucky I have the most supportive surgeon there is.

I wanted to be part of this forum so I had somewhere to turn as only one person outside this community knows the truth. My complications have been awful and I am still tube fed, exhausted, in pain and a myriad of other things over 18months from that first op. I've had many necessary surgeries and almost 20 admissions, so yes, I struggle to cope sometimes so I turn here. I also like to help others as then some good has come out of this despite the fact I am completely utterly miserable.

But from here on, I am happy to discuss by private message, to chat or offer any insight or advice. But I won't post anymore, it's hurt me too much. ASIDE this incident my patience is a little shot....I've had a couple of people want to know a little too much about my situation and then seem to claim they have same yet it didn't add up (tho that wasn't this site), I've had a friend I made claim she was having urgent surgery, but she wasn't and I knew that whilst I then watched everyone give her support yet it was just a lie she admitted to me after mixing up the details, also people who don't help themselves or blow simple things out of proportion. The online world is a bizarre place. I'm extra sensitive I know because I deal with alot so it's my problem and only way I can deal with it is to ignore it. There seems to be a lot of attention seeking which whilst my story may appear it was certainly never the intention and I would hate it to be interpreted that way. I am not someone who copes well with fuss, I'd rather just step away.

I am happy to help anyone who needs my help and in particular those like me for whom this turned into a disaster simply due to bad luck. So I look forward to pm messages.

All the best
Suzy

Hi Suzy. It just breaks my heart what you and Shrinking Violet have to go through. I hope this new option you are researching will finally bring some relief. Thank you for sharing so bravely and I wish you every good fortune from here on xo

Thank you for thinking of me. I have to admit I've not been on here for a while. Things just continue to go wrong. I ended up having the tube removed and am now back living on nasal tubes. I had some kind of reaction after my last endoscopy three weeks ago and ended up back in hospital. I was very ill. I've also been back to the psych hospital for a break. After that I decided with my medical teams blessing to take six weeks off from all appointments but as usual it didn't work out. My iron hit an all time low so I had to have a transfusion which was as always traumatic with my veins. It's never easy for me. Last week I had some further heartache in various areas of my life including finally losing my job. I still have a role but it is no longer the senior management position I held and very much a sit in the corner and now be quiet role. It's flexible though so I can work from home or the office. It's been tough to accept as this was my career and not just a job to me. It's what I studied, and fought ambitiously all my life to achieve. I also lost a good friend and then this past week my grandmother. I became so distressed on Friday I actually for the first time ever, threw up my feeding tube, so am currently tubeless until endoscopy number 32 tomorrow as an emergency addition as tomorrow will be day three with just sips of milk. I can't last longer than that. Anyways, my future remains the same. I have found a surgical option I am heavily researching and discussing, it's worth a shot in my view. But we will see. Won't be rushing into it but October makes it three years of this non stop hell. I am so tired of it. Just so so so so so so so tired....

I'm not sure if Shrinking violet will update herself but she and I are constantly in touch and she continues to also have many many challenges and is in hospital again right now. Her weight is down to just 42kgs, I know she won't mind my sharing, and she is becoming more and more ill, plus getting more and more medical run arounds. I believe she is in good hands right now with a new surgeon and only hope the bypass is done for her sooner rather than later. She has had similar luck to my with feeding tubes and deserves a shot at quality of life as she is one of the sweetest ladies with the biggest heart you can imagine. It is very cruel this surgery when it goes wrong. It is so terribly destructive. 

Current tally therefore....35 admissions (excl day surgeries), 32 endoscopy surgeries as at tomorrow, 14 major surgeries, 3 psych hospital stays, I lost count a couple of months ago but now well over 200 nights in hospital and phi hit the $500k mark....in two years and eleven months all thanks to this op.

Thank you all for your support and understanding.
Xxx

Hi Suzy77,

For some reason, you and Shrinking Violet have been very much on my mind, and I just had to sit down and let you both know that I have been thinking of you both.
x

(((((hugs)))))

Not surprised you are well and truly fed up Suzy. I hope that there is something good coming your way, I really do.

 Sending you some love and hugs Suzy.  My mum was shouting and carrying on one day about all the injustice that had happened to her. I listened to her rant then she looked at me said "well, I'm entitled, aren't i" (to be angry). To which I smiled and  replied "yes. Yes you are entitled ". As you are too. Take care Suzy and thanks for keeping us posted. We care very much.xx

Thanks guys....I appreciate it. As is my luck, im back in hospital yet again. In too much pain with this damn tube. I actually found it funny yesterday when my gp told me I had to come as my luck can't surely be this bad? But after a sleepless night im in a real sulk today and about as fed up as I can be..

Just to let you know I am thinking of you Suzy and sending you healing wishes

Hi Suzy, take care and rest up, be kind to yourself and remember we are all thinking of you and care about how you are even though many of us are in the other side of the country. 
God bless you with healing and pain relief xoxoxox

Hi Jules, im out of hospital but it's complicated. Im in a lot of pain so daily GP right now as my surgeon is away. Thank you for your care, much appreciated. Xx

Hi Suzie, 
I just want to hug you. Xoxoxoxoxo 
How are you today?

Jules

Thank you everyone. Im always so grateful for your kind comments and words of support. It helps more than you know. Well the surgery didn't quite go to plan. I was all ready to go and was last on the list but my surgeon was concerned and said we needed to think about it overnight. So I agonised for almost 24 hours over my options and chatted again with him then later said no I want to try it and I was whisked off to surgery. I felt if I didn't try then Id never know and I just have to keep trying everything or just give up. I rushed out after a couple of days in the hospital in immense pain as I figured I'd only know if the pain would stay if I got back into doing stuff but it was too much and for the first time in all this I had to rent a wheelchair and can barely walk it's too unbearable. I was readmitted to hospital on this past tuesdat and am on very heavy pain relief. I wanted to go home this weekend but I haven't made enough progress so it might be mid next week. If the pain doesn't ease it will need removing in theatre in a couple of weeks time as unlike the Jtube it csnt come straight out. Im pretty depressed and fed up. I just want a break from everything. I am still struggling desperately to see any chance of getting my life back. Anyways I should be asleep so going to say goodnight to you all now. Hope you are all doing well xx

All the best Suzy, I don't think you bring us down, I think you could be any one of us and you are reaching out in a hard time for a soft place to get some support.  And I am sure all the ladies (and men) here are more than happy to listen and send comfort and good thoughts your way. 
Not everyone gets to send you a note, but I am sure we all feel very much for you.
Please hold on and do whatever you need to take care of yourself with your teams help.
Best wishes.

Best of luck with the surgery Suzy, I so hope it brings you some relief. Your courage and commitment is awe-inspiring. I hope you won't let what happened on FB put you off sharing with us here where you are very much appreciated.

I just want to write a quick second comment as I just read your other post Suzy and wanted to say I was thankful that the nasty behaviour you received was on FB and not on this site - on the whole I have found this to be a wonderful place so am actually relieved that this is the case.

Still... SHAME on those others, but to me, you are better off away from them because ultimately they are the negative ones. I understand how hurtful what they said and did was, but please remember that classic break-up line "It's not you, it's them!" (okay, maybe I reversed it, but in this case that's the way you should look at it).  I do find that the digital era has brought out a few more people's true natures - they are "brave" online but in person they would never say what they did and I think that's partly because the personal nature of things is removed and they are not really relating to fully, it's like virtual reality for them and they are not comprehending what harm they are causing to a REAL person.

Hey Suzy, Wishing you all the best for the surgery. I hope it turns out "best case scenario" for you. Sadly it doesn't surprise me that there are some people who have treated you badly - the world is made up of all sorts, but just bear in mind that there are many of us who feel a great deal of empathy for you and want you to feel supported.  I can't help thinking "stuff those others" or even pity them for their lack of humanity (they obviously have deficiency!) Of COURSE you're going to come across as negative because your dealing with a whole lot of crap and suffering for it so expecting you to be upbeat and cheerful about it is a bit implausible - What part of "support site" don't they get???  How dare you bring down their mood Suzy, lol!

So please share away, and keep telling us how you're going.  We can't do much to help but the least we can do is listen and understand. People can always choose not to read it if they can't deal with it.

Sending positive vibes your way,

Im being readmitted tomorrow and surgery tomorrow afternoon. I was very sore after last week's endoscopy which I found unusual but my tummy is very bruised from all the failed attempts at the feeding tube. Hopefully tomorrow works. I've been very upset and distressed for a number of reasons. My coping mechanisms are just not there anymore.

Tomorrow is admission 30 and surgery 14 not to mention 29 endoscopies. I can't explain in words how hard this all is. I hate causing a fuss with my medical team more than anything and just grateful they continue to stand by me and supoort me as,much as they do. Thank you also to those who message with such kindness. It makes a difference when I get hate messages just as much for bringing down the mood and being such a sad case I deserve to be alone and bitter. What people can say to a sick person is disgusting and they don't know how it can affect those of us struggling so much. The worst of the Internet i guess.

Well I'll be in touch with an update again soon.

Thank you everyone
Xx

Thank you all. Things continue to go from bad to worse. I have a nasal feeding tube now after a failed attempt at a peg today. Looks like it will have to be done surgically. Im in so much pain. Don't know when so I just have to stay in here and wait as normal.

Nini that's interesting. I saw her news.com article but didn't realise she had set up a gofundme page. I'll go and have a read through. Her article annoyed me as she is refusing a feeding tube and has only been sick since xmas and suddenly she is national news! Not even an ounce of what I've been thru....but im being a heartless bitch because im bitter and upset....so forgive me. I do know Justine who is mentioned below though and she is a gorgeous soul. Just lovely lady I've met online. It's amazing the power of the Internet sometimes and how it can bring comfort when I really don't know where else to turn in such desperation.....the pacemaker isn't an option for me sadly.

Anyways, much Love to all of you for putting up with my posts and continuing to support me
Xx

Suzy, I know your Doctor has probably gone through all the options for your problem. Has he discussed whether you would get any benefit from a Gastric Neurostimulator? I came across these comments on a Go Fund Me site where a woman was trying to raise the money to have it done privately. I realize that their situations are all different to yours but I thought it might help you feel not so alone.


Justine Graham 1 day ago

I also have gastroparesis for almost 4 years now. I have a gastric pacemaker that was placed in NSW & also have a gastrostomy tube with jejunal extension, I am tube fed 24/7. I understand your situation but there are many other options available if this surgery is not possible at this time, do not lose hope.

Laura Black 1 day ago
I have had gastroparesis for 8 years - at my worst hit a low of 27kg. Agree that you should not lose hope... Tube feeds are not the most pleasant - but perhaps if you've not tried it (am only able to go on information in your article) an NJ tube would allow you to get some nutrition/medications in while you appeal the decision? .............. I made the decision not to go ahead with a j tube, as it would have sat very close to the spinal drug pump I have for another condition (and turned down the pacer for the same reason) but had a long term NJ and did well with it - to the point that I'm now managing with meds, careful dietary management and though I still deal with a lot of pain and vomit most days have regained most of the weight I lost. Hang in there - and don't give up :)

John Abbott 2 days ago
My wife developed gastroparesis. She had no appetite due to nausea and also lost weight and suffered from mineral deficiencies. A gastroenterologist put her on Motillium (domperidone) and this (together with vitamin and mineral supplements) has changed her life. She takes a tablet (or two) exactly 20 - 25 minutes before eating. Not perfect but a hell of a lot better than watching her fade away. Motillium is available on the PBS with authority from Canberra.


hugs Nini

Oh Suzy!

I am so terribly, terribly sorry.
What can they do for you now?

There is nothing we can do, much as we'd like to, except for to give you support by listening, sympathising and sending you healing thoughts.
But, if there is anything we can do, please let us know xxx

Healing thoughts from me and all the best.
XXX

Oh no Suzy!! I'm so sorry to hear that you're having such a hard struggle still.



It's not much but I'm sending you a big cyber hug. 

love Nini.

Thank you everyone. Unfortunately things have gone wrong again and I have to go back into hospital on Thursday. Couldn't save the tube. I feel completely beaten and I've had enough. This will be my 29th admission. I Cant do this anymore. 

Dear Suzy,
None of us wants ill health and none of us asks for it.  Given a choice all of us would say make me better please!
You have tried hard to get better and you are so courageous the way you deal with your situation.
What lovely people you work for, they are to be commended for their support and empathy.
May things start to get a bit better with your work load eased.
All the best and much support from me.
Susan
XXX

Oh Suzy,

You haven't let anyone down.
Unfortunately, sometimes in life, things 'just happen' for no reason and it IS unfair.
I had a friend die unexpectedly on Friday (I haven't from what, I am assuming that there will be an autopsy) who was much loved by her family and friends.  Her youngest is only 10.

I developed ME/CFS/Fibromyalgia after a severe respiratory illness back in 1996 and yes, I am not living the life that I wanted, but it is what I got dealt.
I have now lost 2 jobs due to my health - I had a permanent part time position in State Govt and in October last year was subject to "Employer Initiated Retirement on the Grounds of Ill Health" - and for this last one I am grateful as it was a huge struggle and I didn't have a life outside of work.
I also had to leave my dream job due to my wellness envelope exploded.

I really feel for you - here you are and all you were doing is trying to improve your health.
I hope that you have lots of supportive family and friends.

We are here for you and can only send you wellness vibes xx

Dear Suzy

YOU haven't let anything or anyone down. You are fighting hard to keep going through no fault of your own, and please don't think it is your fault that you had or needed the surgery.

YOU are incredibly strong to keep going as you have, a lot of people would not even be working in your circumstances.

The part time is I hope a good thing to give you time to get feeling better and stronger.

YOU must be considered to be a very valuable staff member for your employer to continue to want to help you and be supportive of your medical condition.

And finally YOU have a lot of support here from those who are inspired by your fight and from all of us here who know that this could have been them.

I wish you healing and better days ahead.