Reality check.

Yep, I've been battling a twisted stomach for 2 years 8 months. It twisted On the day of the sleeve surgery and is not repairable. My research has shown that the twist is generally caused when different tensions are placed on the front and back walls of the stomach when stapling and cutting. Kind of like sewing material with the bottom material stretched on the bias but not the top material.

I'm booked to have an open surgery for RNY bypass but it may be difficult because there's not much remnant of stomach to attach the small bowel to. I've also had a previous stomach surgery for reflux and two hiatal hernia repairs so there will be a lot of scar tissue. I don't know what the plan is if the surgeon can't attach the small bowel to the proximal stomach. Perhaps a gastrectomy? That's been mentioned to me before. This is something I'll have to discuss with the surgeon when I see him again in a couple of weeks time.

Thank you for your update Shrinking Violet.
I am so sorry for you with your on-going nightmare :(
You have had no vestige of 'normal' life for - how long now?

What surgery are you going to be having done?

Thinking of you,
x

HI Shrinking Violet
I have been reading your journey over the last 6 months hoping that you are improving and life is getting easier.  You are amazing-you are a real fighter with such a positive attitude-which I am sure is not always easy. I have nothing to ever ever ever complain about!!! I wish you all the very best and keep fighting.  Please keep us updated.   Wishing you every success with your future operation.  
Sadie

Thanks for thinking of me. I've had a pretty bad week but a lot better now.

I had a blood transfusion on Tuesday and then they tried to put another NJ tube in while I was awake on Thursday in X-ray but my stomach is so twisted it wouldn't go through. So on Friday I had the tube put in under sedation via a gastroscopy. Another blood transfusion on Saturday and finally discharged home last night.

I was so emaciated that twice during my admission the nurses called a MET (medical emergency team) on me. My BP and pulse was just too low. It was like watching a TV drama but I was the patient. Just a tad embarrassing too. Then to top it off, my white cell count was low so I was put in isolation so I couldn't catch anything. So the nurses etc had to wear gowns, gloves masks etc. At least I was garaunteed a private room 😉

The plan is to try and gain some weight with the tube feeds to proceed to surgery in about 5 weeks time, assuming that I'm a bit fitter than I am at the moment.

My goal is to someday have a few bites of pizza. I don't know if this is a possibility, I was too scared to ask the surgeon in case the answer was no. He did say that the surgery might not work and I might come out of it worse off but I've decided it's worth the risk.

Hi Shrinking Violet,

You and Suzy77 have been on my mind, and I've been wondering how you are?
Thinking of you both.
x

I was heart broken to read what you have been going through and find writing anything sounds trite and wrong but that is not the spirit it is written in.

You have offered support and encouragement to so many despite having such devastating experiences yourself and I am so grateful to both you and Suzy for being so open and honest. When considering these options for weight loss we need to know ALL the possible complications as well as the possible benefits and I want you to know how thankful I am for your candid answers to my enquiries.

Sending you big hugs and thinking of you.

Wish I could crawl through here and give you a hug Shrinking Violet!
Hoping to see you on July 4th.

Thanks for all your support. I've been feeling very down and alone. I received a phone call from my home visit dietitian this afternoon and she totally agreed with my decision to refuse to be discharged with an infected tube. Of course she now wants me to have another surgery to have a new one inserted because I simply can't maintain my weight or nutrition on my oral intake capabilities. At this stage I simply can't even entertain the thought of any more medical interventions...I've lost complete faith in them all.

Dropped from 45.5 to 44.8 in the two days since I was discharged....trying to drink Milo but it really makes me feel full very fast. At least I can eat cheese....better than nothing.

Hi Shrinking Violet,

I am distraught at your situation. As a health care worker myself, I am at a loss to understand how your (lack of) "treatment" is explainable for any health care practitioner. I respect your choice as a patient and you should always stand up for your own health rights. I wish I was in the hospital to be able to care for you and advocate on your behalf.

I can only recommend that you put your issues in writing to your states Health investigative body - in NSW this would be the Health Care Complaints Commission (HCCC). I understand that you are at the end of your rope with the absolute lack of care, but the awareness needs to be increased and those who are not doing their job as professionals need to be brought to account.

I am very grateful to both you and Suzy77 who are brave enough to speak out about what can and does go wrong, it may be a small proportion, but it could be any one of us who choose to take a surgical pathway. I made my decision to have surgery only after researching as much as I could - which included posts by yourself and Suzy. It is important that people are able to make the best informed decision possible and without you stepping forward to have these stories out there this information may not be available.

Crossing all fingers and toes that you have some good luck and things go your way.  If you do choose to write a complaint, please let me know if I can be of any assistance.

Ange

Hugs and lots of care from me. You have suffered enough - feel helpless to offer you any consolation at all but don't loose hope try find a new way through this and get some extra supports around you - you deserve the care you very much need.
 Please don't stop the fight to ensuring you get the care you deserve in this countries medical system. Find a new GP who will fight with you. Hugs and more.

Thinking of you lots Shrinking Violet.  Will keep you in my thoughts and prayers.

Actually I was in hospital for treatment for my bone marrow failure and had just had a three unit blood transfusion. The oncologist wanted me to stay in hospital another week but he was overruled by the physician. I am a private patient and have a terminal medical condition which requires regular in hospital treatment. The treatment is becoming less effective and the oncologist wanted me to have an increased dose over a longer period to see if that would give me a boost and improve my general health. The physician decided he would rather I be discharged and just come back into hospital in two weeks time instead of the usual three weeks, as I'm admitted under the physician with only an oncology consult, the physicians decision takes precedence.

I had already been discussing ceasing all treatment with my psyche and have been very reluctant to be admitted (in fact I refused treatment for three months prior to this) and this incident has cemented my feelings that it's time to forego further treatment and let nature take its course. I feel I have so little control over my treatment and my life and the added indignity of being half carried by a stranger to a taxi was about as much as I can tolerate.

All I needed was someone in the medical profession to listen to what I was saying but that doesn't seem achievable.

I don't blame for choosing not to go home with an infection. You are malnourished and struggling and have been there before. Are you going in as a private patient? There are certain criteria the hospital must meet for the funding, and if you don't fit that they send you home. I do believe though that if it is not deemed 'medically neccessary' for you to be a medically supervised inpatient, then perhaps they could place you in as a "nursing home type patient' as respite care. I understand that they pay a lower fee for your bed, and as they feel you don't need hospital care, then they give less supervision so there is not as much money charged to the fund/medicare. But you are still looked after. 
I would be inclined to call the social worker and health fund and ask about being in 'respite care' as a 'nursing home type patient'. It is a different set of rules, and for your own sake, you need to be cared for properly. I believe you can claim up to 60 days per year as a nursing home type patient.
Worth a try. 
Please look after yourself. Legally they have covered their own decisions, but you need to cover yours.

That's nice of you to care but this was my choice. I chose not to be discharged with an infected tube. I could easily have been discharged on oral antibiotics and with my tube in but I've already been there and done that and it didn't work out well so I wasn't going down that road again.

I really don't feel I have a right to complain when the decision to pull the tube was mine alone. I WAS cranky when I was taken by wheelchair to outside the front of the hospital to wait for my taxi and left sitting on a bench. When the taxi came the taxi driver had to half carry me to the rear lift and help me in because I can't walk without assistance. I felt that this was very inappropriate of the hospital staff and I was horribly embarrassed to be almost carried to the taxi by a perfect stranger. Let's just say it's not something I'm going to forget in a hurry. At least I could arrange the walker to be ready at my home when I arrived, I finally had some dignity back.

Far out.  None of this is fair.

Violet, that is shocking! Is there a Patient Advocate or at least a Social Worker at this hospital?? Most hospitals have some sort of system where you can get some mediation or at least put in a complaint. 


Nini

Thanks for your kind thoughts but I'm already home. Discharged with no means of feeding (I just refused to be discharged with an infected tube but was going to be discharged by the docs infection or not) ) but hey...that's life with dead shit docs who don't listen. I'm actually really disappointed because my physician used to be one of the few docs who used to listen but somewhere between being a normal patient and a chronic patient he stopped listening. That's what happens when you have long term issues....you stop being an individual and start being a "problem" to be managed.

Oh Violet, I am so sorry to hear all this has been happening to you still ... I am so glad you can stand your ground - sometimes when there is a problem the dr's like it to 'just go away' than put up and deal with it. I hope that they give you the proper care you need and get you well enough to confidently go home. 

My love to you, hugs and prayers,
xx

Well I've had issues with the feeding tube into my bowel...it was leaking everywhere...messy and uncomfortable. A contrast scan showed it had slipped out of the bowel and all the feed was coming back out the hole the tube entered the skin through. The tube was replaced without any anaesthetic (local or general) because I was added to the procedure list at the last minute. The new tube was larger and longer so the tract had to be dilated and stretched at the skin entry site as well. It was a tad painful but tolerable.

Well, it got infected with pseudomonas which I've had before and started oozing green pus. The docs we're going to send me home on oral antibiotics for the infection but that's happened before and the infection just got worse and worse and I had to see the GP for daily dressing changes and review and then still ended up in hospital for two weeks of intravenous antibiotics.

So, as you can't refuse discharge, I pulled the tube out...I WAS NOT, going home with another infected tube and pus coming out of my bowel. (Also bowel was swollen to size of 30 week pregnancy). So now I have no way of getting the nutrition I need. I weigh 45.5kgs my BMI is 17

I can take some food orally but not enough to maintain my weight or nutrition. Having said this, it's the first time in ? six months or so that I haven't some tube or other sticking out of me....it's bliss at the moment but reality will bite shortly.

Well, that's my update from my reality check. 19 months post sleeve surgery.

Hi

I wish I had read a few reality check stories before surgery, I'm fortunate to have had no issues and am going ok but if I hadn't I would really not have known what to expect. Thanks for sharing and the honesty.

Missy

Just wanted to say thank you for the kind messages for me. I know the lovely shrinking violet won't mind my saying this on her thread. I've been very depressed about what happenned online and also the physical stuff going on as well of course. The kindness and compassion of people is really helping me heal from the hurt from the incident a couple of weeks ago. I still don't know how people can't be compassionate, and can't face that this surgery isn't always a huge success. They don't want to hear it.  Im the first to advocate for it, because I beleive in gastric sleeve surgery, but sadly some of us are that small percentage. Anyways, thanks again and if I can ever be of help to any of you please don't hesitate to pm me. Both shrinking violet and I are having a rough time right now with both of us having a troublesome week but we are passionate about sharing our stories so people can be sure they made an informed decision and respected the seriousness of the surgery. I think I've said it before but the best thing I hope that comes of my problems is that it makes others treasure their sleeves xx

Hi Suzy and Shrinking violet,

Thank you both for sharing your stories - I think you both very brave and resilient.  I am floored and pretty disturbed at how you have been treated Suzy.  When compassion was needed most, you got exactly the opposite.

I am very grateful to have found this forum.  I haven't been sleeved yet but have learnt so much from people such as you willing to share to help others.  The key thing being to do your research, then go do some more.

I wish you both well, you are in my thoughts.

I also want to say thank you both for posting!

I read all of your story Suzy77 while I was considering having the surgery (over 3 years of yes / no).  It helped me 'calm down' and not rush into any surgery (I considered paying outright for lap-band and at one stage the sleeve surgery instead of waiting the 12 months). Also, have another (mostly unsuccessful) go at loosing the weight myself.  Also considered surgeons more, and went with someone who I felt safe and comfortable with (not that that is any guarantee, but I felt better about it).

It is a big decision, it is a risky surgery, and I was someone whose BMI was 37 or 38 at the time of surgery.  I although I sometimes think I should of done this sooner, I am glad I totally considered every angle.

Hope everyone who thinks about self funding the surgery reads your stories and waits the 12 months.

Thank you & I hope both your situations improve!

I just wanted to thank you ShrinkingViolet and Suzy77. It must be so hard to have had your dreams turn into the nightmares they have become but I am so grateful that you have chosen to share your experiences. 

I had read your postings on here prior to my surgery and believe they helped me to make an informed choice. This is not something to be entered into lightly and your stories are testament to that. 

Being kicked off the FB page is just cruel and ignorant, and beggars belief. 

I wish you both peace and a positive, healthy way forward and please know that I believe this will always be a safe, welcoming forum for two such courageous ladies.

Thanks Suzy. It's my pleasure to know and support you. You supported me when my surgery went horribly wrong post op and I was not getting any support from my surgeon....to everyone on this forum....this just proves how important it is to be there for others especially if the outcome is not so good.