Lisa's Hope

Wow, I just found this thread and I'm surprised at all the sleevers that have had problems with bile reflux and esophageal spasms. I've been posting since 10 months post op about these horrid pains and spasms. I was post op 2 years on May 21. At the time of posting, I couldn't find anyone that was having them. I've been putting off getting bypass for several reasons. Number 1 being my husband has terminal liver cancer and was given 6 months in January at the age of 48. So my days are filled with taking care of him and that is how I want it to be. Losing the love of my life is the hardest thing I've ever faced and seeing the physical deterioration is traumatizing. Since he was diagnosed I've gained 20 pounds back. I lost 128 and was 168 and now am 188. I'm so scared I will gain back it all. Recently I've been taking Dexilant for the reflux and levsin for the spasms which definitely helps. I'm just so scared to have the bypass and go through another surgery. Especially,since it will be without my husband because he isn't going to make it. I was self pay for the sleeve because my insurance excluded weight loss surgery. I will have another policy on July 1st but it too excludes weight loss surgery but I was wondering if anyone was approved for bypass because of acid and bile reflux, spasms and gastritis? I would love to hear from all of you that revised and honestly are you glad you did this? I know the spasms are so painful that revising would be welcomed but I'm still scared. Reason is you can get ulcers years and years out and not know you have them because you don't feel the acid anymore. I know of two people that passed away with ulcers. Not mentioning any names because one was family of a friend and the other I just heard about. Hope all is well with everyone that revised. I don't know when I can even think about this. My surgeon has been trying to get me to do this for a year. I'm so sad and heartbroken. Just exhausted. My husband was in the hospital all week last week and now has a picc line which Home Health is going to be helping me with. Hospice isn't an option with me because they want to take away his fluids and meds and dope him up until he dies. Not happening. Only God will say when it is time for him.

Thank you so much Mandy. I appreciate all the great advice. I am taking Dexilant and have tried all the other PPI's which I've tried ALL of them. Dexilant is so expensive but my insurance finally approved the meds. It helps so much better than the rest. I know I need to stop the coffee. I need it but I know it is making the reflux worse but the bile reflux is caused from the motility issues. Oh thanks so much for the recipes for the fudgesicles!! I definitely will try those. I love and appreciate all of you so much for helping me!! <3

Thank you so much! <3

I would love any advice you could give me. I need to get back on track. I'm so down on myself and I know that if I don't do something, I will get back over 200. The weight will be here when he is gone and I know this is a hard battle. I'm so distraught!! UGH.. why can't I be strong enough to not let this happen again! I'm losing in everything. Thank you. I've already lost my parents and several other people in my life so I'm no stranger to grief. I appreciate so much your advice. Thanks again.

I would love any advice you could give me. I need to get back on track. I'm so down on myself and I know that if I don't do something, I will get back over 200. The weight will be here when he is gone and I know this is a hard battle. I'm so distraught!! UGH.. why can't I be strong enough to not let this happen again! I'm losing in everything.

His pain is managed well. I don't have him on hospice as I a his sole caregiver. I know there are mixed feelings about this so I won't really get into it. I don't like the hospice care here and Im not willing to give up his albumin infusion which he can't get on hospice. It makes him feel better so we continue to do this every two weeks. I would also have to give up care of our primary doctor and have hospice Dr's take over. Not willing to do that either. I think he deserves everything I can do so I will continue to do so if I can. Thanks for all of your support guys.. I appreciate it.

Yes he gets this every two weeks.

Thank you all for your support. Seems my husband is getting worse. They removed 23 pounds of Fluid this morning and last week he spent 3 days in the hospital. Usually, he feels much better after the parancentesis to remove the fluid but today he doesn't. He is sleeping a lot lately and he is just skin,bones, and fluid. He is so pitiful. :'( I do everything for him and yesterday after his bath, I was trying to put deodorant on him and I tell y'all he has no tissue between his bones and skin. This is so hard to watch. I never realized it would be like this. God help me and please continue to pray for my strength and his comfort. God Bless! Thank you.

Thank you all so much. I love the support I get here. All of the advice helps me so much. I had to put Bear in the hospital two days ago. He started vomiting and his labs were all off. Finally after two days he is stable and I will bring him home tomorrow. Just hurts me so much know that itwon't be for long. It is hard to be happy. I love him so much and can't even describe how much that really is. He rescued me from a life of abusive partners and a Dad to my daughter that was never there for her and he became her dad. He really is my knight in shinning armor. The most selfless man I'veever met and now I'm losing him. I'm blessed that I've had him in my life for 11 years. Oh my Lord in Heaven.... this is sooooooo hard! :'( Thanks again to all of you!!

I've lost 10 pounds since January - and most of it in February when I was doing this. I quit, and I've not lost anything since! I am thinking now that I see this I'll have to try it again, too. It really did help. I also did the 5:2 a couple of weeks, but this far out, I find that pretty hard to do. We have the same goal weight. You are so close! I want to believe that I can do this.

Awesome!! So glad to hear you are having some success with this too. This is totally the ticket for me. I am at my lowest weight post op ever!!! ( I am 2.5 years post op) :-) Keep me posted! I'm certainly going to try this starting today. How much have you lost since January. I was 12 pounds from goal and gained back because stress of cancer in my family.

Thank you to all of you for your support. I knew I could come here and get such good support and love. I don't have family here but my husband does. He has had two brothers pass away of cancer and his father also. His Mom is in her 80's so she needs care too. We were caring for her before Bear's diagnosis. I call him Bear but his name is Barry. If any of you are interested you can read about his updates on youcaring.com/hopeforbear. Not asking for donations.. just posting so you can read his story. This cancer is relentless!!! So heartbreaking!! He has two living brothers that come around sometime. My family is in Georgia. I only have a brother and sister. My parents are gone. My husband and I are Christians and I do have the support of my brother who is a Minister. I do have to start taking care of me. I sometimes feel like I will break and if I do no one will be here to take care of him. I have my days where I break down but I know I need to hold on. I appreciate all of you here. You are all right. I have to change this. It is better for me and him. I get no nutrition all day and when I do eat I usually have chicken, fish, almonds, cheese. Sometimes I will have something bad but I tell you the bad thing I'm having everyday is sugar coffee and fudgsicles. I'm out of them and I'm making the decision right now to NOT buy them anymore!!! I have to figure out a way to eat 2 to 3 hours and break this addiction to sugar. Here is a pic of me and my husband before he was sick 8 months ago and now. He doesn't even look like the same person. :'(

I had my surgery at Des Peres Hospital on May 21, 2012. I didn't know this was going on. Wish I had!

Sorry you are going through this LuLugirl. It really is so hard. With me I still can eat but have the spasms so bad so painful. Good luck with your appointment. I hope you can get relief. Keep us informed. My 2 year appointment is 6/18 but my surgeversary is May 21. I'm hoping to find out what I can do as well. I know I don't want the bypass but I don't think there is any other way.

I sent you a message Becky before reading this I wouldn't go for the stent. I think they are saying that since the spasms are caused from GERD and bile reflux that bypassing it will stop it. But still, ulcers are a real problem with bypass patients and most don't know they have it. I'm so tired of all of this and I don't know what to do. Please keep me informed if you have surgery! I would really like to follow you especially since we go to the same place! Still taking care of my husband with terminal cancer and my spasms are worse. I've been in a "hell" for 4 months! Heart broken!!

Thank you so much for the info. It is too late for my husband unfortunately. He is dying. Again, I do appreciate the information concerning my GERD. My spasms are relentless and are now worse. I'm not sure if I'm coming or going. Thanks again.

Thank you Linda so much. I appreciate all the prayers. Lord knows we need them. I thought I would lose my Bear last night. He made it and they took off 13 liters (28 pounds) of Fluid off his abdomen. He is 6'4" and now weighs 222. He has lost 70 pounds since January. I don't think he will last too much longer. :'( The link is www.youcaring.com/hopeforbear Thanks again for your prayers.

Thank you so much for the information. My husband is terminal. In saying that he has NASH non alcholoic cirrhosis and liver cancer which they caught to late because the Dr. WOULD NOT do a ct after I begged for two years because of his family history. He doesn't drink and never has. He doesn't smoke either and never has. Two brothers and his Dad died of cancer. He is just 48 and he really looks so much older. My heart is broken and I am just taking care of him as best I can. He isn't in pain and we are Christians and we know where he is going. We take off 25 lbs of Fluid every week from his tummy. It is gut wrenching to watch him. First picture is us last August, then last week, last pic is when we met 10 years ago. He was diagnosed in Jan. :'( I can't even think of my weight. I was almost to goal and have gained 15 pounds back. Mostly from sugary coffee drinks and creamy fudgesicles at night. Just pray for us if you believe in prayer. Because we do. Thank you so much.

You have been through soooo much!!! I feel for you. Your story made me cry. I have esophageal spasm from the surgery in 2012 which is NOTHING compared to what you are going through. I will pray for you. You need some relief and a break.

Ask the Dr. to prescribe Carafate liquid. It helps so much. Not sure what you are taking but you need to be on prilosec and carafate. Hope you feel better soon!

I called my doctor and he won't prescribe it because of the lidocaine. Any other suggestions without it?