My Ongoing Story :)

[ausmith 374]

Alright, I talked to the surgeon yesterday and here is what he said.. The manometry measures 13 swallows, my lower esophageal pressure was abnormal in all 13 of the swallows and my lower esophageal sphincter malfunctioned 9 out 13 swallows indicating that I'm bordering on the edge of achalasia which is what leads to esophageal cancer...bad! He thinks if we change the anatomy of the stomach (revise to bypass) the pressures will equalize and hopefully that sphincter will go back to normal stopping the achalasia and stopping all the horrible pain I'm having. So, I have to jump through all the same hoops as I did the first time to get the revision which I think is stupid because I don't even want this surgery, I just want the pain to stop. Regardless, it's their policy so I have an appointment for medical clearance on Thursday morning then an appointment for a psych evaluation and a nutrition consult on Friday morning. Then, the insurance has to approve the revision which could take up to 30 days so I suppose now it's a waiting game. I'll update you guys when I have a date, in the meantime I'm ordering Vitamins and more Protein Powder since my stuff is expired.

Good luck the end of the tunnel is very close, hang in there

[ausmith 374]

Good luck the end of the tunnel is very close, hang in there

Becky hoping you are ok and the revision went well

[Beckyyb93 225]

Becky hoping you are ok and the revision went well

Yep, I'm doing great and the revision went very smoothly! When they got in there they found that my stomach had herniated up into my chest cavity which is obviously very abnormal and could have been the source for some of my pain. Surgery was supposed to be about an hour and a half and it took them a total of four hours to get my stomach pulled back down to the right place and then of course do the bypass. When I got out of surgery I was in a lot of pain and the next day was in tons of pain but ever since that third day things have gotten better and better. I have no pain with swallowing anymore and I'm eating more solid food now then I have in 2 years!! I feel great, have tons of energy, am doing great in class and my whole future looks 100x brighter now. I can't even begin to describe how happy I am that I did this, it's already drastically changed my life and it's only been a month! I've also lost 20 pounds since pre-op so that's a cool bonus! I'm progressing well and was just cleared for exercise which is exciting since I actually have the energy to go to the gym they keep telling me this is the part of recovery where you have the least energy but I think that I was in so much pain before that this feels great and if it really gets EVEN better I just don't know what I'll do with myself lol I'm back to the old straight A kickin butt student that I was before I had surgery I keep acing quizzes and exams, doing great in my lab (even though it's 3 hours with no air conditioning, sitting down, eating, or drinking allowed!) and am finishing all the homework early, heck I'm even back to having time to re-org all my notes..I don't sleep all the time so I just have all this extra time, it's CRAZY! My mom asked me why I think I'm doing so well in my classes because she's seen me struggle for my B's over these last few years and I could honestly tell her it's because I feel so good, we both cried. I just never thought this was possible, it amazes me every single day.

YAY!!!!!

Edited August 27, 2014 by Beckyyb93

[It's all new 453]

Yep, I'm doing great and the revision went very smoothly! When they got in there they found that my stomach had herniated up into my chest cavity which is obviously very abnormal and could have been the source for some of my pain. Surgery was supposed to be about an hour and a half and it took them a total of four hours to get my stomach pulled back down to the right place and then of course do the bypass. When I got out of surgery I was in a lot of pain and the next day was in tons of pain but ever since that third day things have gotten better and better. I have no pain with swallowing anymore and I'm eating more solid food now then I have in 2 years!! I feel great, have tons of energy, am doing great in class and my whole future looks 100x brighter now. I can't even begin to describe how happy I am that I did this, it's already drastically changed my life and it's only been a month! I've also lost 20 pounds since pre-op so that's a cool bonus! I'm progressing well and was just cleared for exercise which is exciting since I actually have the energy to go to the gym they keep telling me this is the part of recovery where you have the least energy but I think that I was in so much pain before that this feels great and if it really gets EVEN better I just don't know what I'll do with myself lol I'm back to the old straight A kickin butt student that I was before I had surgery I keep acing quizzes and exams, doing great in my lab (even though it's 3 hours with no air conditioning, sitting down, eating, or drinking allowed!) and am finishing all the homework early, heck I'm even back to having time to re-org all my notes..I don't sleep all the time so I just have all this extra time, it's CRAZY! My mom asked me why I think I'm doing so well in my classes because she's seen me struggle for my B's over these last few years and I could honestly tell her it's because I feel so good, we both cried. I just never thought this was possible, it amazes me every single day. YAY!!!!!

It is wonderful to read that your complications have resolved. The fact that your mind is not constantly distracted by pain must allow for vastly improved focus and concentration - not to mention the return of hope and joy! You have so clearly conveyed your excitement in having your life back. Congratulations to you and best wishes as you thrive from here forward! Mary

[yummymummy32 30]

What a great story glad it turned out ok, how are things with you now?

[ausmith 374]

Yep, I'm doing great and the revision went very smoothly! When they got in there they found that my stomach had herniated up into my chest cavity which is obviously very abnormal and could have been the source for some of my pain. Surgery was supposed to be about an hour and a half and it took them a total of four hours to get my stomach pulled back down to the right place and then of course do the bypass. When I got out of surgery I was in a lot of pain and the next day was in tons of pain but ever since that third day things have gotten better and better. I have no pain with swallowing anymore and I'm eating more solid food now then I have in 2 years!! I feel great, have tons of energy, am doing great in class and my whole future looks 100x brighter now. I can't even begin to describe how happy I am that I did this, it's already drastically changed my life and it's only been a month! I've also lost 20 pounds since pre-op so that's a cool bonus! I'm progressing well and was just cleared for exercise which is exciting since I actually have the energy to go to the gym they keep telling me this is the part of recovery where you have the least energy but I think that I was in so much pain before that this feels great and if it really gets EVEN better I just don't know what I'll do with myself lol I'm back to the old straight A kickin butt student that I was before I had surgery I keep acing quizzes and exams, doing great in my lab (even though it's 3 hours with no air conditioning, sitting down, eating, or drinking allowed!) and am finishing all the homework early, heck I'm even back to having time to re-org all my notes..I don't sleep all the time so I just have all this extra time, it's CRAZY! My mom asked me why I think I'm doing so well in my classes because she's seen me struggle for my B's over these last few years and I could honestly tell her it's because I feel so good, we both cried. I just never thought this was possible, it amazes me every single day. YAY!!!!!

I am so happy for you, I was a little worried because we hadn't heard from you. I struggle with the fact your Dr's knew how bad things were for you why didn't they know about your stomach moving so frustrating that they could have fixed that part of it and given you some relief instead of making you deal with the issues you have had for the last 2 yrs. so very glad that life is back on track for you. Good Luck time to make up for those 2 lost years

[Beckyyb93 225]

I am so happy for you, I was a little worried because we hadn't heard from you. I struggle with the fact your Dr's knew how bad things were for you why didn't they know about your stomach moving so frustrating that they could have fixed that part of it and given you some relief instead of making you deal with the issues you have had for the last 2 yrs. so very glad that life is back on track for you. Good Luck time to make up for those 2 lost years

Awh, now you guys are going to make me cry!! It's the most wonderful feeling knowing that people who have never met me are so caring and supportive. I didn't feel scared and alone on surgery day because I have all of you guys who know what it feels like and have been with me from the beginning. I'm not a very religious person but I know that all of your prayers and positive thoughts helped my surgeon fix me! I also don't understand how they could have missed the stomach herniating THROUGH my diaphragm into my chest cavity, it seems like that would have showed up on one of the scans! I also had a diverticulum which is a little hard to explain, it's kind of like a hole on the inside of your body where things can get stuck. So, I had a stricture that the acid had been eroding at for two years right where my esophagus met the cardiac "top" sphincter of my stomach, then a little further down I had a hole where food was getting stuck, and then the rest of my already small (sleeved) stomach went through my diaphragm and was in my chest cavity. HOW THE HECK DID THEY MISS THAT?!?!?! Lol, I don't blame them though because I do believe that they didn't know which isn't necessarily their fault even though they probably should have believed me and taken my pain more seriously, it's not like that's a normal occurrence.

But, just like you said..I'm making up for lost time now and I feel AMAZING! I'm so happy to be able to live my life now..the hope I feel for my future now is so strong

[Beckyyb93 225]

I have some bad news I was doing really well until about 3 weeks post-op when I started having this very strange pain when eating. I immediately panicked and thought that the spasms were back. I had been off my Calcium channel blocker for spasms since surgery and I started taking it again the first night I felt the pain. The next day I started throwing up foam and undigested food so called my surgeon and the nurse said I probably have a stricture. I'm like OMG, not again!! That was a Friday and he couldn't do the endoscopy to look for the stricture until later in the week. Over the weekend anything that went down including Water came right back up within seconds, I called his exchange and he told me to come in Monday and he would fit me in. I started a new job as a nanny on Monday though and was spending the whole day with the newborn's mom so we made sure I was a good fit, I was so dehydrated that my hands were shaking and I was super pale, she noticed I didn't eat anything and was really worried about me (she is my fiance's sister so my well being is also important to her as family) so she decided that I was too sick to be a nanny and I needed to spend my time outside of school resting. She is probably right, holding a 13 pound baby and keeping up with him for eight hours a day is probably too much for only being 3 weeks out but never the less I was sad. On my way home, I felt terrible and I looked at my hands and the skin was nearly transparent, I could see hundreds of veins in my hand and fingers so at that point I know I was too dehydrated. I turned the car around and headed straight for the ER. When I got there they ran blood work and as I already knew I was extremely dehydrated and my potassium was dangerously low which I've had issues with before and have been on a cardiac floor on heart monitors while they replenished it. So, they admitted me right away NPO and first ran a pure potassium drip then pushed fluids as fast as they would go for a few hours. In the morning my surgeon did the EGD and saw that I have a marginal ulcer which is basically on the staple line between our pouch and the intestines. He kept me another night and started me on all kinds of medication for ulcers and pain then sent me home the following day. On Thursday I went in to see his PA and she admitted me back to the floor again because I still couldn't keep anything down and they are worried about my potassium/heart. I was on a saline potassium mix the whole time I was there and given lots of pain medicine and was basically told to just wait it out. I finally got to come home on Sunday and have been on bed rest not allowed to drive or lift over 10 pounds because of the severe dehydration and pain medicine.

This is all pretty depressing for me because this was supposed to fix everything for me and I was due some good luck but instead it just feels like problem after problem keeps occurring and I'm drowning in so much pain I have cried a lot this week just because I have to get fluids down to stay out of the hospital and it's so painful to swallow anything. I saw the doc again yesterday (Wednesday) and he gave me Phenergen instead of Zofran and upped my Amitriptiline to 75mg twice a day which knocks me out cold. He just wants me to be as comfortable as possible for a few days while my body heals and gave me the option of doing it at home or in the hospital. I obviously chose home because it's much more peaceful and I can actually rest. So, I'm on 3 different medications just for the ulcer, Lortab for pain, Phenergen for nausea, and Amitriptiline which is supposed to help me heal and let me get some sleep. I'm going back to see him tomorrow so they can do a Barium swallow to make sure everything is working properly and that the ulcer is the only problem.

The Phenergen is amazing, so so much better than Zofran. I have the suppositories which is awkward but really helpful because I can't throw it up which is what I am/was doing with some of my other meds. I wasn't even able to tolerate water or juice without severe pain previously and today I've been drinking juice and even had some mashed potatoes with very minimal pain which is wonderful! It feels so good to be able to eat food, I know that I still have to be really careful though and let the ulcer heal because I won't be able to take Phenergen for the rest of my life lol!

I'm trying to stay as positive as possible and tell myself that ulcers heal and then I'll be right back on the road to recovery but it's hard to believe that the pain will actually ever stop because it seems like I have a kick me sign on my back and just get every single complication imaginable. Also, these ulcers are just a side effect of surgery and usually aren't influenced by what you are eating which is nice to know so I don't blame myself, not that I ate anything remotely spicy or strayed from the diet at all. All of your prayers and good thoughts are greatly appreciated while I get through yet another complication, hopefully it will heal soon and I can continue progressing!

[ausmith 374]

I have some bad news I was doing really well until about 3 weeks post-op when I started having this very strange pain when eating. I immediately panicked and thought that the spasms were back. I had been off my Calcium channel blocker for spasms since surgery and I started taking it again the first night I felt the pain. The next day I started throwing up foam and undigested food so called my surgeon and the nurse said I probably have a stricture. I'm like OMG, not again!! That was a Friday and he couldn't do the endoscopy to look for the stricture until later in the week. Over the weekend anything that went down including Water came right back up within seconds, I called his exchange and he told me to come in Monday and he would fit me in. I started a new job as a nanny on Monday though and was spending the whole day with the newborn's mom so we made sure I was a good fit, I was so dehydrated that my hands were shaking and I was super pale, she noticed I didn't eat anything and was really worried about me (she is my fiance's sister so my well being is also important to her as family) so she decided that I was too sick to be a nanny and I needed to spend my time outside of school resting. She is probably right, holding a 13 pound baby and keeping up with him for eight hours a day is probably too much for only being 3 weeks out but never the less I was sad. On my way home, I felt terrible and I looked at my hands and the skin was nearly transparent, I could see hundreds of veins in my hand and fingers so at that point I know I was too dehydrated. I turned the car around and headed straight for the ER. When I got there they ran blood work and as I already knew I was extremely dehydrated and my potassium was dangerously low which I've had issues with before and have been on a cardiac floor on heart monitors while they replenished it. So, they admitted me right away NPO and first ran a pure potassium drip then pushed fluids as fast as they would go for a few hours. In the morning my surgeon did the EGD and saw that I have a marginal ulcer which is basically on the staple line between our pouch and the intestines. He kept me another night and started me on all kinds of medication for ulcers and pain then sent me home the following day. On Thursday I went in to see his PA and she admitted me back to the floor again because I still couldn't keep anything down and they are worried about my potassium/heart. I was on a saline potassium mix the whole time I was there and given lots of pain medicine and was basically told to just wait it out. I finally got to come home on Sunday and have been on bed rest not allowed to drive or lift over 10 pounds because of the severe dehydration and pain medicine.

This is all pretty depressing for me because this was supposed to fix everything for me and I was due some good luck but instead it just feels like problem after problem keeps occurring and I'm drowning in so much pain I have cried a lot this week just because I have to get fluids down to stay out of the hospital and it's so painful to swallow anything. I saw the doc again yesterday (Wednesday) and he gave me Phenergen instead of Zofran and upped my Amitriptiline to 75mg twice a day which knocks me out cold. He just wants me to be as comfortable as possible for a few days while my body heals and gave me the option of doing it at home or in the hospital. I obviously chose home because it's much more peaceful and I can actually rest. So, I'm on 3 different medications just for the ulcer, Lortab for pain, Phenergen for nausea, and Amitriptiline which is supposed to help me heal and let me get some sleep. I'm going back to see him tomorrow so they can do a Barium swallow to make sure everything is working properly and that the ulcer is the only problem.

The Phenergen is amazing, so so much better than Zofran. I have the suppositories which is awkward but really helpful because I can't throw it up which is what I am/was doing with some of my other meds. I wasn't even able to tolerate water or juice without severe pain previously and today I've been drinking juice and even had some mashed potatoes with very minimal pain which is wonderful! It feels so good to be able to eat food, I know that I still have to be really careful though and let the ulcer heal because I won't be able to take Phenergen for the rest of my life lol!

I'm trying to stay as positive as possible and tell myself that ulcers heal and then I'll be right back on the road to recovery but it's hard to believe that the pain will actually ever stop because it seems like I have a kick me sign on my back and just get every single complication imaginable. Also, these ulcers are just a side effect of surgery and usually aren't influenced by what you are eating which is nice to know so I don't blame myself, not that I ate anything remotely spicy or strayed from the diet at all. All of your prayers and good thoughts are greatly appreciated while I get through yet another complication, hopefully it will heal soon and I can continue progressing!

Bec I can't believe this is happening to you again. Although look on the bright side they have found out what it is, they have been able to give you something for pain AND you are finally getting Fluid and soft food. You are a million times better off than last time. Keep your spirits up this is going to be ok that's what I keep telling myself anyway. You are in my prayers..

[ebony'sjourney 5]

P p

[Beckyyb93 225]

Alright guys, I have some really bad news I went in on Friday morning to get a Barium swallow test and as I watched the contrast go down I saw it..spasms! I felt it and saw it and just couldn't believe it because the whole point of the bypass was to stop the powerful spasms that were giving me so much pain and not allowing me to eat solid food for 2 years. I almost cried, my doc wanted to do another EGD to make sure there was no stricture so he sent me straight to the endoscopy center and took a look. After, I just expected to go home since I just came in for a visit but he directly admitted me to the med/surg floor which was surprising for me. I had my fiance bring me some clothes from home and awaited the reason for the admit. A GI came in later that afternoon and we talked for a while, I gave him my whole long story and he was really nice. He said since I had been and am still on a Calcium channel blocker (Cartia) for spasms that we should try something else and his suggestion was Nitroglycerin cream which is better known as "heart cream" it is a vasodilator and is used for spasms and lowers blood pressure. They had admitted me so they could monitor me on that medication and make sure my blood pressure didn't drop too low since it isn't high to begin with and make sure I didn't have headaches which are the most common side effect. We are slowly raising the dose and I'm not having any adverse reactions to it which is great. I'm not up to the full dose yet so am not positive how it is working yet although with the Lortab, Phenergen and the Nitro cream I've been tolerating soft food and Fluid pretty well which is good!

I'm sad because I feel like we are starting over with the spasms and I wonder if doing the bypass was the right move but then I remember how bad the acid reflux was and how it's gone now and that has tremendously helped with the pain so I'm trying to tell myself it was worth it because now I'm not at a risk for Barrets which is good too. Now we have to do another manometry to check the function of my esophagus because last time we did this test it was extremely abnormal and we were in the beginning stages of achalysia which is bad and contributed to the surgeon's decision to do the bypass. If it is still abnormal which the surgeon is worried about, we will have to treat that along with the spasms so it doesn't get any worse. I'm crossing my fingers that it got better with surgery but somehow doubt it since I still have the spasms. He doesn't have any idea why the spasms came back but now the only option is to play with different medications to try to treat the symptoms of the regurgitation, nausea, and major pain. He has a few more ideas for different medications to try if the Nitro doesn't help enough but it's very depressing to look forward to the future of only soft foods again I'm trying to stay as positive as possible and try to let the medications do their job and hope that they will control it well going forward and allow me to eat more normal food. It's so hard to be patient but that's my only option right now so I'm doing my best. Obviously I won't be able to rely on the Lortab and the Phenergen forever so we will have to tweak the medications enough to get off of those on a regular basis although there is no problem using Phenergen on an as needed basis.

That's about all for now, I'm trying so hard to keep my head up but each time I feel the spasms and throw up I just cry because I just want all of this pain to stop and I'm just so young. Also, if the achalysia gets bad I'm at a risk for other problems and it just seems like I'm too young and was too healthy to be worrying about the long term health of my esophagus. This surgery ruined my life and I'm attempting to put the pieces back together but it's so hard. The GI said my esophageal anatomy is just so abnormal and the surgery put the icing on the cake for the spasms and trouble swallowing.

I'll try to keep you guys updated, I need to catch up in my classes since I've been hospitalized 3 times in the last 2 weeks. I have a lot of work to do and it's all a little daunting especially with only being able to tolerate a little bit of food and Water and being on two medications that lower blood pressure for spasms which just makes me a little light headed and groggy along with the pain meds and the Phenergen which are both known for that as well. I'm hoping I can get everything together this semester so I can finally start clinicals, I know you guys are all praying for me and I know I'll get through this somehow. Thank you for all the kind words and positive thoughts during this hard time for me, I really do appreciate each and every one of you who have helped me through this whole journey!

[missbrown30 148]

Hi Becky,

My heart is truly aching for all of the pain and suffering you have gone through these past 2 years. I am sending you prayers of healing. I wish you the best of luck on your journey.

[viktoryalynne 28]

Wonderful Becky!

[AngPel72 5]

Nice sweet shirt! I'm an AZD as well. Albeit, it was from 1990-94 but still always in my heart.

[ausmith 374]

Alright guys, I have some really bad news I went in on Friday morning to get a Barium swallow test and as I watched the contrast go down I saw it..spasms! I felt it and saw it and just couldn't believe it because the whole point of the bypass was to stop the powerful spasms that were giving me so much pain and not allowing me to eat solid food for 2 years. I almost cried, my doc wanted to do another EGD to make sure there was no stricture so he sent me straight to the endoscopy center and took a look. After, I just expected to go home since I just came in for a visit but he directly admitted me to the med/surg floor which was surprising for me. I had my fiance bring me some clothes from home and awaited the reason for the admit. A GI came in later that afternoon and we talked for a while, I gave him my whole long story and he was really nice. He said since I had been and am still on a Calcium channel blocker (Cartia) for spasms that we should try something else and his suggestion was Nitroglycerin cream which is better known as "heart cream" it is a vasodilator and is used for spasms and lowers blood pressure. They had admitted me so they could monitor me on that medication and make sure my blood pressure didn't drop too low since it isn't high to begin with and make sure I didn't have headaches which are the most common side effect. We are slowly raising the dose and I'm not having any adverse reactions to it which is great. I'm not up to the full dose yet so am not positive how it is working yet although with the Lortab, Phenergen and the Nitro cream I've been tolerating soft food and Fluid pretty well which is good!

I'm sad because I feel like we are starting over with the spasms and I wonder if doing the bypass was the right move but then I remember how bad the acid reflux was and how it's gone now and that has tremendously helped with the pain so I'm trying to tell myself it was worth it because now I'm not at a risk for Barrets which is good too. Now we have to do another manometry to check the function of my esophagus because last time we did this test it was extremely abnormal and we were in the beginning stages of achalysia which is bad and contributed to the surgeon's decision to do the bypass. If it is still abnormal which the surgeon is worried about, we will have to treat that along with the spasms so it doesn't get any worse. I'm crossing my fingers that it got better with surgery but somehow doubt it since I still have the spasms. He doesn't have any idea why the spasms came back but now the only option is to play with different medications to try to treat the symptoms of the regurgitation, nausea, and major pain. He has a few more ideas for different medications to try if the Nitro doesn't help enough but it's very depressing to look forward to the future of only soft foods again I'm trying to stay as positive as possible and try to let the medications do their job and hope that they will control it well going forward and allow me to eat more normal food. It's so hard to be patient but that's my only option right now so I'm doing my best. Obviously I won't be able to rely on the Lortab and the Phenergen forever so we will have to tweak the medications enough to get off of those on a regular basis although there is no problem using Phenergen on an as needed basis.

That's about all for now, I'm trying so hard to keep my head up but each time I feel the spasms and throw up I just cry because I just want all of this pain to stop and I'm just so young. Also, if the achalysia gets bad I'm at a risk for other problems and it just seems like I'm too young and was too healthy to be worrying about the long term health of my esophagus. This surgery ruined my life and I'm attempting to put the pieces back together but it's so hard. The GI said my esophageal anatomy is just so abnormal and the surgery put the icing on the cake for the spasms and trouble swallowing.

I'll try to keep you guys updated, I need to catch up in my classes since I've been hospitalized 3 times in the last 2 weeks. I have a lot of work to do and it's all a little daunting especially with only being able to tolerate a little bit of food and Water and being on two medications that lower blood pressure for spasms which just makes me a little light headed and groggy along with the pain meds and the Phenergen which are both known for that as well. I'm hoping I can get everything together this semester so I can finally start clinicals, I know you guys are all praying for me and I know I'll get through this somehow. Thank you for all the kind words and positive thoughts during this hard time for me, I really do appreciate each and every one of you who have helped me through this whole journey!

Beccy this is terrible news I'm so sorry for you but you have proven you are a fighter in the past and I hope and pray you have enough fight left in you to tackle this next challenge. Thinking of you and hoping for a full recovery for you.