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Recovering from Gastric Bypass for the Reflux


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#1 Peggy

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Posted 25 May 2012 - 08:00 PM

On April 26th I had the Gastric Bypass surgery for my reflux. My reflux had gotten so bad that I was having attacks 24/7. I constantly aspirated into my lungs; it was burning my voice box and has changed my voice; I have no motility left in my esophagus or stomach; when I would have an attack it was affecting my heart. When I had these attacks they were like being burned alive in the inside. That is the best description I can give. It is so painful and I would have to drink a lidocaine/malox concoction called a GI cocktail. I would have to repeat these sometimes because the 1st one wouldn't take. If I had drank 3 of them and still being burned then I had to go to the Emergency room and get hooked up to IV's of Protonix, pain killer and nausea medicine. This cocktail was horrible. I would throw up and after drinking them then it meant an entire day of nausea. I did this day and night and night and day. That's how bad it was. It was because my stomach was full of bile as it wasn't emptying and this would back up my esophagus.

I had the surgery at the University of Minnesota. I am one of the first to have this there as this surgery is just starting to be tried for reflux. I had 2 surgeons........a Thoracis surgeon and a Bariatric surgeon. They said that my stomach insides were terrible.........all enflamed and swollen. What they did was take a very small part of my stomach (the size of a ping pong ball) and then made the bottom of my esophagus that opens to this little stomach very big at the end. The rest of my stomach which is cut away from the working one is still present and connected to my intestines. I guess it still performs some type of purpose.

So now for the rest of my life I am only able to eat about 3 tblsp or maybe up to 1/2 cup of food at a time. I can't drink while I eat as this will fill my stomach so I have to wait to drink. I am not able to gulp liquids anymore either and have to take little sips. If I eat even one spoon too much of food it gets stuck and prevents even saliva from going down and I eventually end up throwing up the overage amount that I ate. I am to also avoid any sugar and no carbonated beverages.

This surgery came about very quickly and I wasn't counseled like patients who are having the gastric bypass patients that are obese are. I was scheduled for the surgery and that was it.

I was a sugar addict. I was never hungry due to my stomach being full of bile all of the time and my stomach would tell my brain that I was full. So basically lived on sweets, which I ate due to cravings. I know that I went through sugar withdrawal.

After the surgery and the 3rd day home from the hospital I had a reflux attack. I was devastated thinking here I went through this drastic life-changing surgery and I still get to suffer with reflux! Well the doctors at the University thought it was just due to things needing to calm down as my stomach was so bad and what they found was one of the worst cases they had seen. Well I can say it is 4 weeks today that I had the surgery and it's been 3 days since I had reflux so maybe they're right.

So now I am fighting depression due to the eating situation. To know that I will never be able to pile food on my plate on the holidays like I did before when my eyes were bigger than my stomach. I will never be able to go out to eat as it's a waste of money as I can only eat 3 tblsp. I know this will pass and I just have to shut this thinking down. I just loved to eat though. Even watching TV is hard as its commercial after commercial of food. Watching movies everyone is eating or at a restaurant with a plate of food eating. Our society is basically about eating. I also still crave sugar and candy.

I have lost 18 pounds in 25 days. I still have a tube coming out of my stomach that I can put syringes of water into so I don't get dehydrated. I am now seeing the doctor weekly due to the weight coming off so fast. I am 5'7 and weigh 164 pounds and they said I could end up losing 40 to 50 pounds. Well if I lose that much I will look like a skeleton. It's amazing, in that years ago when I was overweight after I had my kids, I thought that if I could have bypass surgery I would lose the weight. I guess be careful what you wish for.

Because I'm not eating much I have no stamina at all. I have no energy and it doesn't take much at all to wipe me out. I already was dealing with such horrific fatigue and now with this on top of it I am not able to get much done at all.

When I had the surgery and was taken to my room I was in the bariatric ward. They all looked at me thinking why in the world was this woman having bypass surgery?! Some of these poor people were so large and to think they too would now be eating so very little when I'm sure they were probably consuming alot of calories.

This disease has so done a number on me. The last year has been so bad and it just doesn't seem to let up. It's one thing after another. I have always had the motto "It is What it Is" and would just work through what was thrown at me. People would comment how they admired me because of how strong I am and my disposition. Well I have come to the point where I just don't feel that strong right now. Enough is enough. I have so many people thinking of me and I am so very grateful. I just wish I was the energizer bunny who was able to push through and do whatever needed to be done. Instead my life has become about being sick and the bad days are outnumbering the good ones.

Sorry to ramble on. Hugs to all.

#2 judyt

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Posted 25 May 2012 - 08:38 PM

Hi Peggy,

So lovely to hear from you, even though you think you are rambling, it is good to hear that you still have what it takes to tell us all about it.

Earlier this year I began to wonder if I was headed down the same track as you, when I had a bowel blockage and was in hospital for most of February. My stomach did not drain and I had a nasal/gastric tube to drain the bile. I know something of what you have been through.

A number of years ago now I had a procedure of gastric banding, which is similar to that used to help people lose weight. In my case I had tumours in the Fundus of my stomach and these needed to be removed. I lost a lot of weight in a very short time and although it is nice to be smaller, it doesn't do anything for your good looks!!!!

This year I was off food for quite a while, just existing on intravenous nutrition and suddenly was back to my starvation persona. It is now the end of May and I have regained a few pounds. I am supposed to have a prescription nutrition drink twice a day but I find that hard to fit in. Slowly, slowly you get better. As far as the fatigue is concerned, yes it is partly that you have no fuel, and partly that you have had a huge intervention. You were not well before all this started and you are in an almost worse state now, but be patient it will improve. I am sure that you would have had a long anaesthesia and that knocks the stuffing out of you for a start. I have several friends who were nurses and they have told me not to be surprised if it takes 6 months to feel my old self again. Not that my old self was anything to write home about but you know what I mean.

Anyway, I really wanted to commiserate with you, but to add that things do get better. Your stomach still has a lot of healing to do and one day you will be able to eat more. My friends used to tease me about how little I could eat, but I know they are all envious of the shape of me!! Well, they are until I get sick and start to look dreadful again.

As for the energizer bunny - I waved goodbye to him long ago. Now a good day is when I can do 2 or 3 extra things on top of the basics of laundry and meals.

Keep up the posting. We are interested in what is happening with you.

Gentle hugs and very best wishes.
JudyT

#3 Joelf

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Posted 26 May 2012 - 10:37 AM

Dear Peggy,

I'm so sorry to read your post and can't begin to imagine what you've had to go through. Indeed, I think you must be very strong to have had to put up with such dreadful symptoms and I really hope that this surgery will improve the quality of your life, albeit that you'll have to make some unpleasant changes to the way you view eating and food.

Thankfully, I don't suffer with GI involvement, so can't empathise with you as well as Judy; however, please know that I'm thinking of you and hoping that things very soon improve.

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#4 debonair susie

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Posted 26 May 2012 - 02:28 PM

Peggy, I have had you in my thoughts since I read your posts prior this one. As both Judy and Jo alluded to, you have been through SO MUCH :o , but I really appreciate your sharing up to and since, your surgery, in this, your most recent post; and NO! You did not ramble on, believe me.

I am so glad Judy T shared with you her experience, as well as the prospect of your feeling better; she mentioned that it will take time. Even though it sounds like a while, if you can feel hope about feeling a whole lot better than you HAVE been (for quite some time), then in the end, it will likely feel worth it. However, I can sure understand how you must feel at this point in time; again, you've had much happen and processing it all is taking time too.

I just want to send unending :emoticon-hug: s to you and let you know that I continue to hold you in my thoughts and know you are stronger than you may realize.
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#5 miocean

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Posted 26 May 2012 - 07:35 PM

Dear Peggy,
Shall I say congratulations on having the worst case they have ever seen? :crying:

Thank you for being honest about being tired of it all and how terrible it has been, same with you Judy. I know we all try to maintain a positive attitude and be encouraging but I know we all want to scream ENOUGH IS ENOUGH!

I am honored to know such strong people, but it is ok to break a little sometimes. Ironically it makes us stronger.

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#6 Amanda Thorpe

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Posted 27 May 2012 - 04:15 PM

Hello Peggy

At least you can still eat food albeit small amounts and perhaps it seems so small because you were, like so many people, overeating before? I know my husband is a man (bigger appetite) but the amount of food I put on his plate is ridiculous, even more ridiculous is that he eats it all. (Wafer thin mint anyone?)

I hate to say it but it could be worse for you believe it or not. I have a dear friend who lives from total parenteral nutrition (TPN) which is feed (a liquid concoction of lipids, sugars, nutrients etc) being fed through a port directly into her heart. At the worst point she was about 6st, she has put weight on and is now about 7 1/2st and although she will eat food her digestive system can't so anything with it, not digest or absorb, so she just throws it back up over a period of days and the nausea never goes away. Unfortunately she can't live like this for much longer and is dying.

You can still go out to eat, order children's meals. The point of going out to eat will become about the ritual of sharing the experience of going out and being waited upon rather than stuffing your face...kinda like what I have to do since I lost my appetite last year. If we go out for a meal, I only eat a small portion (even of dessert rather than stuffing my face) but my husband is still able to enjoy the food and we enjoy being together so we enjoy the experience, the ritual not just the eating of the food. At the end of the experience who cares about the plateful of uneaten, yet paid for, food? Not me for sure!

For now you can't do much more that feel what you've lost and so you should. In the future you will start to adjust to life with a new attitude towards food and be able to fully appreciate the loss of reflux.

Take care.
Amanda Thorpe
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#7 judyt

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Posted 27 May 2012 - 07:02 PM

Hi Peggy,

It does sound harsh, but you will get to accept your limitations food wise. We go out every week to eat, sometimes I can eat a small adult meal, sometimes there is half a plateful left. On Wednesday I went to the Art Gallery with a girl friend. We caught the bus, walked very, very slowly up the hill from the bus stop. We visited several galleries with me sitting down to 'contemplate'? the art works, quite frequently. Then we had lunch. I ate half a muffin with half an orange juice to drink. I buy my cold drinks in screw top containers when I am out then I can take what is left with me for later.

The thing is we had a great outing. She got to see as many galleries as she wanted to, we had a few laughs.

Hang in there and get as much out of life as you can.

JudyT

#8 Sandy B

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Posted 28 May 2012 - 05:28 AM

Hi Peggy,

Sorry to read you are feeling so down after your surgery. I can fully sympathise with what you are going through having had major surgery myself last year. I had an oesophagectomy for cancer last August, followed by another operation two weeks later when it was discovered I had gangrene of the top of the stomach so the top portion was removed. Progress was further hampered by a chyle leak, pneumonia and a pleural effusion and later on a psuedo-obstruction. All in all I was in hospital for nearly sixteen weeks and like you I could barely eat anything when I first came out of hospital.

I'm still not back at work yet, but bit by bit things improve and you do get better, you start to regain your strength and your weight very slowly comes back on and any pain or discomfort you are in lessens. I was never a heavy weight before surgery, only about 120 pounds, but that fell to 99 pounds at my worst and is now up to 112, so still a little way to go. Like you if I over eat then it comes back up to say hello, so as soon as I get the warning signs I am full, I have to stop. I have no valve between my stomach and what is now my new oesaphagus (made from stomach being stretched up into throat) so often dont know I am full until I get a lump in my throat which is most unpleasant!!! I am eating more now than I did this time a year ago when I could barely get anything down because of the size of the tumour. I also take liquid supplements at the moment because I cannot manage to eat the right amount of calories in a day.

I know our situations are different Peggy, but I'm sure there will come a time when you start to feel better, when you adjust to your limitations, it just sometimes takes along time. Major surgery definitely has an impact on you emotionally. Pre surgery I rarely ever cried in my lifetime, post surgery I have made up for the last 54 years. I'll cry at anything, I don't know why, can't explain it, but I guess it's just the norm after life changing surgery which is what you have had, so don't be hard on yourself. Sometimes I feel a little down too, but I will not allow myself to become depressed, because I am stubborn and it would just feel like another blow I guess.

My heart really goes out to you Peggy, but try and be strong and keep your chin up, you have been through a lot and it will get better.

Regards

Sandy B

#9 debonair susie

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Posted 01 June 2012 - 10:28 AM

Hi Sandy and thank you so much for sharing your surgery experiences with her...with ALL who are reading/posting here!

I just want to say that my heart goes out to you as well, having been through such an ordeal as yours. If I could have a wish granted, it would be that no one would ever have to go through horrible health issues. :crying: I am just so relieved to read that you are doing better from the point you were a year ago and reporting that you work on keeping positive, despite what you, Peggy, JudyT and other special ones...have endured.
Please know that I will keep you in my thoughts and send :emoticon-hug: s of endless supply to ALL of you!


Peggy
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#10 Amanda Thorpe

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Posted 03 June 2012 - 05:55 PM

This thread has made me realise that we all have something to bear and thankfully these forums have room for everyone, from mild to severe. A very wise, revered and much loved friend once pointed out to me that some people might wrongly consider a Raynaud's attack/digital ulcers mild but if they stop a person from doing the thing they love, like using their keyboard to keep in touch with these forums, that can be as devastating for them as heart failure was for me. I have to use a wheelchair when outdoors but someone with bowel problems may also find navigating the outdoors just as difficult but for different reasons, is one worse than the other? Is myocardial fibrosis worse than pulmonary fibrosis? Is kidney failure worse than gastric problems?

Thankfully here no one condition trumps the other so we have room for everyone's experience. I have a lovely friend who has cried in pain from a Raynaud's attack, I have cried in pain myself, was one of our experiences more valid than the other? By no means, we both felt our pain equally whatever the cause. I'm housebound so may want to go out one day but have no one to push my wheelchair so can't then go out, someone else may have digital ulcers and want to go out but on that day be unable to use their fingers to button up their coat so can't then go out. Is one reason more disappointing than the other? By no means. Practically there may be a huge difference between being tied to a dialysis machine and having to cancel a longed for day out, like a wedding, because of fatigue but emotionally they can be just as devastating. It's worth remembering this otherwise we can inadvertently categorise peoples' experiences making them less relevant. All of our pain, including emotional, and all of our experiences are equally valid here.

For 5 years I have had escalating pain from scleroderma, it's all in my feet and calves but it's severe enough to be the main reason I use a wheelchair outdoors. As well as the mechanical pain I have neuropathy, ulcer pain, rheumatic pain and skin pain. With it comes the knowledge that it will never go away, it can only ever be managed. I have to reconcile myself to a life of pain, imagine that, but my battle with pain is no more or less relevant than someone else’s battle with reflux or fibrosis or Raynaud’s or ulcers, or mobility problems, or bowel problems, or joint problems, or dental problems, or anything else. Scleroderma affects all of us differently hence the snowflake reference which is totally brilliant by the way.

My dear friend is dying from complete gastric failure, she survives from total-parenteral nutrition (TPN) not food, and not for much longer but she still wants to be hopeful, is grateful for small things and enjoys. Even with a limited future she still wants to be encouraged and be an encouragement. I second that and hope I am an encouragement, am hopeful, am grateful and enjoy. Be honest? Most definitely and I always am and to prove that, at one point I got so desperate as to consider the unthinkable. Some of the symptoms we have to live with because of scleroderma, knowing they are incurable, is enough to send you over the edge, I not only get that, I live that. I don’t want that to define me though, it might determine how I live (wheelchair, housebound etc) but it doesn't have to define who I am. I can still choose to be encouraged and to encourage others however bad I have it and believe me it’s been bad and not just for me but for others too.

Everyone’s experience is equally relevant here, whatever you're struggling with, and so is your pain.

Take care.
Amanda Thorpe
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#11 Shelley Ensz

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Posted 03 June 2012 - 07:39 PM

Hi Peggy,

I am very sorry for all that you have gone through and with the incredibly rapid major adjustment you have been forced to make. Even though you've had a surgery that will eventually put you out of much of your physical pain, it brings along with it heaping quantities of emotional pain. So likely you feel like you should feel happy and grateful that at long last something was done, but then again, are totally dismayed by the consequences it has entailed.

So even though you have gained something (perhaps improved health in the long run), you have lost something major (your total joy in eating). Therefore, it's necessary to go through a grieving process. You have lost things near and dear to you, and you have yet to learn how to adapt to that both physically and emotionally.

I think all of us can relate to the process of illness having taking away things we love; but with each event we all go through our own grieving, too, be it small or large or really major. So I believe it's fair to say, nobody really knows exactly what you are going through physically, but probably all of us are familiar with what you are going through emotionally, because we have all suffered losses in our life (as you have, too) and I haven't yet met a person who hasn't suffered some sort of major loss in their life.

Remember on your journey though this, that letting the grieving out, as you have begun to do, is the first step in the journey to healing. So many of us feel your pain and we want to help you shoulder it. Picture yourself holding hands with all of us, walking forward, and looking at the light at the end of the tunnel.

I don't know what your light will be like. Maybe it's when you realize you no longer even want sugary things. Maybe it's when you someday find more energy because you are more slender. Or when you realize you gave up sharing huge meals with others, but you no longer care and can just revel in the conversation. Or when you go shopping for your new "skinny wardrobe".

Don't even think of counting your blessings now. Don't even try to force yourself to look forward to your light at the end of the tunnel; there is plenty of time for that later on. Just know that as you go through this, we are all here for you, all along the way.

:emoticons-group-hug:
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#12 Amanda Thorpe

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Posted 04 June 2012 - 12:20 AM

Hello Peggy

You may want to consider some sort of grief counselling, I know that sounds weird but here me out. With loss comes grief and with grief comes all sorts of unpleasant emotional states and sometimes it helps to have professional help navigating our way through them.

I started grief counselling some time ago and it has allowed me to accept the things I have lost and in doing so this has enabled me to begin moving into my new life, with all its flaws especially living with a disease that makes decisions for me that I can only learn to live with, this includes side effects of medications I choose to take, for you a medical procedure. Although I choose to take them I don't choose to have the disease that makes the choice necessary, kinda like going to the dentist, you choose to because you have to! Not only is counselling enabling me to move into my new life but to accept the limitations of it and the lack of control in it.

As Shelley said we all loose soemthing(s) because of scleroderma, whether the ability to eat as we once did or for some altogether, mobility, employment, our appearance, our health, ability to earn an income ever again, relationships, self esteem, confidence, ability to function as we once did, a "normal" lifestyle as in be awake during the day and asleep at night, our social life, life without pain, life without medication and side effects, life without medical procedures and side effects, life without constant tests, and I'll stop now as I could go on forever!!

You have to reconcile yourself to what you have lost before you can enjoy the gains and you may need help in doing just that. I do hope that you get through the loss and grief sooner rather than later so you can start to enjoy the gains because if anyone deserve to enjoy something it's you.

Take care and please keep telling us how you are, so many people here want to know and are hoping it's getting better for you.
Amanda Thorpe
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#13 Sandy B

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Posted 05 June 2012 - 03:44 AM

Hi Amanda and Shelley,

I think you have hit the nail right on the head, well in my case any way. I never realised that the tears I sometimes shed for no apparent reason are all part of a grieving process. Tears for my mum who I had lost at the end of 2010, whom I never had chance to grieve for and tears for the journey I went through in hospital. I have to admit it was a very long and gruelling journey at times and still haunts my dreams and sometimes my waking moments. The nursing staff on the whole were very good, some absolute angels but there were one or two which perhaps would be better suited in another profession, preferably not the caring kind.

I hope you don't mind if I get a few things off my chest and share a few of the experiences with you, as a way of cleansing myself. Perhaps the most memorable experience was when I was in ICU, I had woken up from a deep sleep in the middle of the night panicking unable to breathe, I managed to get the attention of the medical staff who worked on me, trying to clear my chest. They brought in the physiotherapist who pounded away at my chest and the mobile xray unit and ecg machine. For three nights after this I was scared to go to sleep, scared because everytime I started to drop off my blood pressure dropped setting the alarm off on my monitor. Two days later the ICU manager told me they weren't sure if I had had a mini mini heart attack or whether the oxygen supply had been cut off to a small area of my heart, but the ecg showed there was a small area of damage. To this day I still don't know what caused the damage to my heart but it was a truly terrifying experience at the time.

Prior to this incident, I never felt brilliant after my first operation. I pushed myself to do the exercises the physiotherapist insisted on. The pain in my chest was getting worse and one night I had called the nurse because I was in so much pain. She told me to use my pain control pump more which I did and when I called her again a few hours later feeling much much worse she said I had over used it,which you cannot do. Within 24 hours of this incident I was back in theatre with a suspected leak and infection. They opened me up and found I had gangrene from the previous surgery (oesophagectomy). I also had quite a considerable chyle leak and had four drainage tubes in. This is when I developed pneumonia and the pleural effusion. I spent a week in ICU which is when the above incident happened and was eventually transferred back to the ward.

The lowest point for me was at around ten weeks into my stay and I was nearing the point where medical staff were happy for me to go home. My bowel completely stopped working. For five weeks it completely seized up, my stomach swelled to the size of my daughter's who was eight months pregnant at the time and I was in considerable discomfort. I was threated with the possibility of more surgery which would would involve a temporary stoma. All my normal bowel medications had been stopped prior to this as I had been nil by mouth and was going to be sent home with a nasal feeding tube. They tried bowel preparations drugs used in colonoscopys, which didn't reach the blockage. What it did do was turn the contents of my bowel to liquid which I was then vomiting up for about two weeks as they kept repeating the preparation. For me this truly was the lowest point. I felt dirty and thoroughly disgusted with my body. Eventually after three flexisigs without any pain meds (I think this is basically like a colonoscopy only they could jet water in to try flush out the bowel) they cleared the blockage. When things started to move, they flowed and flowed and flowed. One day I had an accident, couldn't make it to the toilet in time, I called the nurse and she just left me sitting in wet sodden clothes for twenty five minutes and I cried and cried, I rang my bell and a health care nurse eventually came in and cleaned me up and helped me shower, but most importantly she treated my with dignity and didn't abandon me to sit in wet dirty clothes. I could go on and on about my experiences in hospital, it wasn't all bad, I did meet some truly wonderful Doctor's and nurses and patients as well,

My stay in hospital was nearly sixteen weeks in all. Sixteen weeks watching other patients in for the same operation come and go after ten to fourteen days. Sixteen weeks of considerable pain most of the time. of fear, of indignity so I guess it does take a long time to get over it, to grieve as Amanda and Shelley have both said. Like I have said in my previous post, I do not feel depressed, I just feel tearful at times for no apparent reason and what they have said makes perfect sense to me now, that you need to grieve for something you have lost. My loss isn't as great as Peggy's, as I am now able to eat little and often and it is now ten months since surgery and my eating has improved since the early days. My heart definitely does go out to her and I hope her suffering like mine, will improve with time, that she may eventually eat a little more, that the discomfort she still feels improves too, but more importantly I hope she finds peace in own body. And thankyou Amanda and Shelley for helping make sense of my own situation.

Regards

Sandy B

#14 miocean

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Posted 05 June 2012 - 06:54 AM

Dear Sandy,
Although we all have our different stories we can all relate to the pain, fright, loss, frustration, embarrassment, etc. I admire you because even though you have had a terrible time of it you are still able to find good things to say.

I was hospitalized for over a month in 2004 when I stopped breathing, my heart stopped, and my kidneys failed. To this day we don't really know why, I do not fit the pattern of scleroderma renal failure even though that was what I was diagnosed with. Dialysis for 5 1/2 years, a transplant 2 years ago that has greatly improved my quality of life but medicine that is setting off all kinds of physical and emotional problems. The anti-rejection medications are very dangerous, as they cause cancer, high blood pressure, high cholesterol, diabetes, and skin cancer but nobody warned me about the emotional side effects and the doctors deny them. They cause side effects that supplements and other meds are prescribed for that cause side effects, so more meds, a vicious cycle.

I don't cry anymore, haven't since 2001. I just get ANGRY!!! I have doctors contradict other doctors and say negative things about them. These are the people I am trusting my life to so it is very frightening and disturbing. I sought grief counseling at the onset of all of this and am now in therapy. Today I go to the psychiatrist and will get even more meds to add to my way too many. I just can't take it anymore. I am having trouble with my marriage, my friendships, and am sometimes afraid to express an opinion because I have been beaten down so much by all of this. Fortunately, my husband is understanding and helpful, has gone to counseling with me, and is so patient but I have been difficult for him. I have always been a pleasant person and don't want to end up old and cranky!

It sounds like you have been through a terrible time of it, hopefully now things will get better. The thing about this disease is you never know which way it will go. Although I can complain about some things other things have improved or at least stabilized. Like you, my experience with doctors and hospitals hasn't always been the best and I'm sure we could all trade stories. I try to tell myself these people are trying to do their best but are sometimes overworked and most of the time do not take the entire patient and the quality of life into account. No excuse, though. Thankfully I have insurance, when I see these bills coming in I get even more upset.

miocean
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#15 Amanda Thorpe

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Posted 05 June 2012 - 12:19 PM

Oh Sandy, I didn't know whether to cry or get angry reading your post so I settled for both. Firstly never say your loss is less than another person's or their's is greater because that is not the case. Whatever the event the loss feels the same. In my earlier post on this thread I tried to explain that but perhaps didn't do a very good job at doing so. What I mean is that you could say Peggy's event may be worse than yours because it's ongoing as in forever BUT the pain, anger, disappointment, wretchedness, helplessness and loss you felt and some of which you still feel because of what happened to you in hospital is no less painful, relevant and worthy of acknowledgement than Peggy's is. I hope this makes sense and that, Peggy, you don't mind me using you as an example here, I mean no disrespect by it.

I also question why some people are in the nursing/caring professions. When Ma was in hospital awhile back when she first broke her hip, a lady came to either change her bedding or wash her (can't remember which, sorry) and Ma said okay but please don't move this leg, pointing to the one attached to the broken hip so for reasons known only to the lady in question she went and picked up said leg. When Ma sent her packing she had the audacity to go cry and play the wounded one 'cause she was shouted at. Say what? I suspect we could have the longest running thread in the history of ISN on this topic!

Sandy please give yourself permission to admit that your hospital experience was horrendous and you cry all you want about it, you have good reason to. I had to smile when you said you're not depressed but you cry for no reason, that's like saying smoke is billowing from my house but it ain't on fire. You may indeed be a tad depressed or be suffering a sort of post traumatic stress thingy and there's no shame in either. You might want to find someone totally unconnected to you (like a counsellor) and talk it through with them and anything else you feel relevant. It never ceases to amaze me the difference this makes.

Take care.
Amanda Thorpe
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#16 Amanda Thorpe

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Posted 05 June 2012 - 12:24 PM

Miocean I am sorry things feel so bad right now and all I can suggest is that you keep doing what you're doing which is engaging in professional help, being honest about how you feel and always remaining hopeful. Hopeful you say? Yes. If you weren't you wouldn't waste time trying to get better because you wouldn't believe that you could. If anyone can pull it outta the bag it's you.

Take care and please let us know how you're fairing.
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#17 judyt

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Posted 05 June 2012 - 06:24 PM

Hello Everybody,

I hve just arrived home from another overnight in hospital finally having the second stage of my SNS. There is lots to read on the forum and I have been having a look at everybody's comments.

My stay this time was almost uneventful, and I have to say that the staff were all helpful and kind. I did have some unexpected happenings, the first being that I got a bit dehydrated over the no eating time so when I woke up my blood pressure was very low and my oxygen saturation was unstable. However that was all fixed by drinking lots and having a long time on oxygen prongs.

The next thing to go wrong was my medication regime. Every time I am there they manage to mess up my meds. This time I took all my own but that threw them into a tizz too. Anyway, we managed to come to a compromise except that I was not allowed to have my Amlodipine because the BP was already too low - I agree. What I didn't expect was that just one dose was missed and I had a Migraine. I had hoped that it would take longer than that to have an effect. You will appreciate what I am saying Amanda, and to top it off they tried to tell me pain medication was all they could offer me and they KNOW I can't tolerate it. Grrrrrrrrrrr. I try to impress on them that I must have my meds BEFORE I eat but still my breakfast got cold this morning.

I really do think that try as they might to understand Scleroderma, it is just too rare here for them to have enough experience of what it means.

Anyway, I am home and happy and headacheless now so it is onwards and upwards (I hope).

To Sandy and Peggy, I think you are so brave, these stomach things are so horrible and I am living in hope that I don't get any recurrences of what has gone on already this year.

Best wishes to all
JudyT

#18 Joelf

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Posted 06 June 2012 - 12:48 PM

Judy, I'm so pleased to hear that you're home again now, despite a few blips with your medication and eating regimes.

I hope, as well, that it's onwards and upwards for you.

Sandy B, what a truly horrendous and undignified experience for you; I'm so sorry. I do hope that you will start to feel better and that things improve very soon for you.

miocean and Amanda; it never ceases to make me feel humble when I realise what you have had (and still have to) deal with on a day to day basis.

My heart goes out to each and everyone of you.

Best wishes,

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#19 Shelley Ensz

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Posted 07 June 2012 - 02:34 PM

Hi Judy,

Welcome home from the hospital. I am glad you got them sorted out for taking your meds. We always try to keep breakfast bars on hand when either of us is hospitalized, as there are so many occasions to miss a meal, or to have to wait a long time for one. They can at least take some of the edge off hunger, in a pinch. And I don't know why, but hunger seems worse for the waiting, when you're in a hospital. Anyway, I'm glad you're home!

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#20 Sandy B

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Posted 09 June 2012 - 04:00 AM

Hi All,

Well, had my first bit of therapy on Thursday in the way of my daughter coming to stay and opening up for the first time, how bad last year really was at times. My daughter actually knew and had fought the temptation to go behind my back and have a word with nursing staff. Well after many, many tears it was all out in the open, I do feel better for it, sharing it, but I know that that isn't the end of it, there are still more tears to come....

Since the surgery and all the chest problems I encountered, I pursued my chest doctor relentlessly about my breathing and continuous cough and pain. I finally had a phone call from him Friday regarding the latest more detailed scan. On a good note although there is a bit more scarring, it doesn't show any current signs of active scleroderma in my chest and the pleural effusion has improved. What it does show is a nodule on my lung, which probably isn't so good. Fortunately for me the chest consultant has emailed my surgeon who carried out the oesophagectomy and as I am due to see him this coming Tuesday to have the bottom of my stomach stretched, I haven't got long to wait. This could be an early indication of an infection or the start of a tumour. I guess if I hadn't pursued the chest problems then I might not be finding this out until a later date.

Trying to keep an open mind until I have some definite answers, but will keep you informed as and when....

Regards

Sandy B