Allie
Long overdue Update!
Dec 13, 2007
Sorry I've been gone so long. I've just been enjoying my family and kids too much to be on this computer very much. I'm doing pretty good lately. I'm taking very high dose pain killers right now to be able to eat. The doctors have come to the conclusion that I've developed a very rare chronic pain disorder that has stemmed from all of these surgeries I've had to my very fickle pouch. I had so many compications that they had never seen before that I'm kind of writing a new chapter in WLS for them I think.........so to speak. I know right now, we're in a holding pattern with my treatment because of the holidays. My surgeon wanted to give me a break (and probably give himself a break 
) and just give me my pain killers throughout the holidays so I can actually spend some time at home before he puts me back into the hospital or long term care facility to see what they can do about my pain and weaning me from these pain meds, if that's possible. He wants to see if he can get me to a lower dose of medication to control this pain, he just doesn't think it's going to be possible. It may be something that involves a PICC line and IV nutrition but I just don't know at this point. So anyway, I'm hoping that after the new year, we'll get back to that...........which will mean going back into the hospital for a long time, but as long as I can make it through the holidays with my family, I'm a happy camper.
I've been having such a great time with my family that I can hardly stand myself!!!! I missed them so bad when I was gone and now that I'm home, I don't take one minute for granted. I've been trying to do anything and everything I can with them. We're going to spend time with our family over Christmas time and that is going to be GREAT!! We're going all the way to the big Tennessee. Fun stuff!! I hope there will be lots of snow, but hope that it's not falling as we're coming in or leaving!! LOL
Well, I hope everyone is having a blessed holiday season and have a Merry Christmas!!
) and just give me my pain killers throughout the holidays so I can actually spend some time at home before he puts me back into the hospital or long term care facility to see what they can do about my pain and weaning me from these pain meds, if that's possible. He wants to see if he can get me to a lower dose of medication to control this pain, he just doesn't think it's going to be possible. It may be something that involves a PICC line and IV nutrition but I just don't know at this point. So anyway, I'm hoping that after the new year, we'll get back to that...........which will mean going back into the hospital for a long time, but as long as I can make it through the holidays with my family, I'm a happy camper. I've been having such a great time with my family that I can hardly stand myself!!!! I missed them so bad when I was gone and now that I'm home, I don't take one minute for granted. I've been trying to do anything and everything I can with them. We're going to spend time with our family over Christmas time and that is going to be GREAT!! We're going all the way to the big Tennessee. Fun stuff!! I hope there will be lots of snow, but hope that it's not falling as we're coming in or leaving!! LOL
Well, I hope everyone is having a blessed holiday season and have a Merry Christmas!!
Well I have some NEWS!!
Nov 14, 2007
Well, I got some news today. My doctor said that he WILL get me out of here by Thanksgiving so I can at least spend the weekend with my family. Thank God!!! He is HOPING that he will have his triplicate prescription pad by then and then he'd be able to write my prescription for my pain meds so I am able to function at home. I don't know what will happen after the weekend is over. I'd probably have to come back. 
But at least I'd have about 5 days!! But if his prescription pad doesn't come.......I can't go! 
We also talked about my biopsy. I do not have anything BAD in there (like cancer)........just the fibrosis that we already knew was in there......thank God. He's also going to run my case by another doctor here in Dallas to see if he might know of anything that this could be or what could possibly be going on. My doctor said I could just simply have a chronic pain syndrome associated with having the bypass. It's a possibility with any abdominal or chest surgery to develop this chronic pain syndrome, but it's VERY VERY rare. Leave it to me to get the rare things. I've been one string full of rare things since June!! Geesh!!
We also discussed reversal of my surgery. If I get down passed 250, close to 200, and I still have this pain, we're going to reverse my surgery. He said that he would just cut out the 150 cm of intestine that he initially bypassed and hook my stomach back up to the intestine that my pouch is hooked up to right now. So I would still have some malabsorption and the potential to dump, but that I would have the mechanics to be able to maintain my weight.
So.......that's where everything stands right now. Some good news and some really frustrating news. But for now I'm hoping and praying that he gets his triplicate prescription pad by Thanksgiving because I will be one crushed Momma if I can't be home to celebrate with my family!!
Well, thanks for listening to me..........again.......and for sticking with me. It means a lot and keeps me going. It's just that as more time passes while I'm cooped up in this hospital, the harder it is on me. 3 weeks+ is a loooooong time!
Love ya'll!!
But at least I'd have about 5 days!! But if his prescription pad doesn't come.......I can't go! We also talked about my biopsy. I do not have anything BAD in there (like cancer)........just the fibrosis that we already knew was in there......thank God. He's also going to run my case by another doctor here in Dallas to see if he might know of anything that this could be or what could possibly be going on. My doctor said I could just simply have a chronic pain syndrome associated with having the bypass. It's a possibility with any abdominal or chest surgery to develop this chronic pain syndrome, but it's VERY VERY rare. Leave it to me to get the rare things. I've been one string full of rare things since June!! Geesh!!
We also discussed reversal of my surgery. If I get down passed 250, close to 200, and I still have this pain, we're going to reverse my surgery. He said that he would just cut out the 150 cm of intestine that he initially bypassed and hook my stomach back up to the intestine that my pouch is hooked up to right now. So I would still have some malabsorption and the potential to dump, but that I would have the mechanics to be able to maintain my weight.
So.......that's where everything stands right now. Some good news and some really frustrating news. But for now I'm hoping and praying that he gets his triplicate prescription pad by Thanksgiving because I will be one crushed Momma if I can't be home to celebrate with my family!!
Well, thanks for listening to me..........again.......and for sticking with me. It means a lot and keeps me going. It's just that as more time passes while I'm cooped up in this hospital, the harder it is on me. 3 weeks+ is a loooooong time!
Love ya'll!!
Surgery Update
Nov 09, 2007
Oh man am I EVER in so much pain!! I just can't seem to get on top of the pain. Ever since I left the recovery room my pain hasn't been under control. Then all last night when I would call for pain meds it would take her an hour and a half to bring me my meds EVERY time!!!! I would be practically in tears. And then they would bring me pills and those would take at least an hour to get into my system and they never worked. It has been one God awful mess after another. It's almost 24 hours later and my pain STILL isn't under control!
They did the surgery yesterday evening. He took a biopsy of my small intestine. I don't know when the results will come back on that. He also looked way up there by my pouch and found some scar tissue up there where he had not previously been able to look before. It was across my liver over on to my pouch and wrapped around there. He thinks maybe, FINALLY he found the cause of why I've had so much pain when I eat and drink. He removed all of that, so let's HOPE that is the reason!!!! I'd love to be able to go home a new person by Thanksgiving.
Also, my wedding ring is GONE!!!!! I took it off in the OR and gave it to my OR nurse. She put it on her finger and said she'd slip it on my finger before I woke up. Well, I woke up and guess what? No ring!!! I'm so pissed and hurt right now that my ring is gone. That just simply can't be replaced. No amount of money in the world can replace that ring. It's my WEDDING RING for crying out loud. It just makes me want to cry everytime I think about it. The past 24 hours have been a freakin' nightmare that I just want to soon forget.
They did the surgery yesterday evening. He took a biopsy of my small intestine. I don't know when the results will come back on that. He also looked way up there by my pouch and found some scar tissue up there where he had not previously been able to look before. It was across my liver over on to my pouch and wrapped around there. He thinks maybe, FINALLY he found the cause of why I've had so much pain when I eat and drink. He removed all of that, so let's HOPE that is the reason!!!! I'd love to be able to go home a new person by Thanksgiving.
Also, my wedding ring is GONE!!!!! I took it off in the OR and gave it to my OR nurse. She put it on her finger and said she'd slip it on my finger before I woke up. Well, I woke up and guess what? No ring!!! I'm so pissed and hurt right now that my ring is gone. That just simply can't be replaced. No amount of money in the world can replace that ring. It's my WEDDING RING for crying out loud. It just makes me want to cry everytime I think about it. The past 24 hours have been a freakin' nightmare that I just want to soon forget.
Hospital Update - TWO Weeks here & I REALLY need some SUPPORT!
Nov 05, 2007
Well it's been 2 weeks since I've been in the hospital. I don't know how much longer I'll be here. I'm supposed to have 1 of 2 surgeries this week. My doctor had told me that during this process while he was going to try and wean me down off the pain medicine that if we got to 8mg. and it didn't work, that he was going to take me back to surgery and get a larger piece of the intestine that has all those white spots on there to take back and do a better biopsy on it. Well, yesterday was the day that we tried to go down to the 8mg. and it did NOT work.
But then the other day he proposed another surgery. THIS surgery scares the crap out of me. It's called a vagotomy. It is typically used for people that suffer from peptic ulcers. They go in there and cut the nerves. In the case of people with ulcers, it stops the acid pumps from producing acid. Well in my case he is hoping that by severing the nerves, it would stop the pain that's been going on in my pouch. Well I asked my surgeon if this would definitely stop the pain and he couldn't tell me for sure. He doesn't actually do this surgery so he was going to have the surgeon that does do this surgery come and talk to me and answer all my questions. Well, I told my husband today about this surgery and he said absolutely not. He does NOT want me to have this surgery. He said he's ok with the biopsy surgery but not the nerve severing surgery. Well I pretty much agreed with him because what if they sever those nerves and it doesn't stop the pain or it causes some other type of problems. I would be totally screwed and there wouldn't be any way to fix it.
So it looks like sometime this week I will be having surgery to do another biopsy on my intestines where all that white stuff is. They will actually be resecting part of it to biopsy and sewing my intestines back together. I hope and pray to God that this surgery goes well, that there's no complications and that we get some good definitive answers from this. I'm getting so majorly discouraged laying here day after day after day, missing out on my life, barely seeing my family. It's SO sad and it feels, at times, like someone is ripping my heart out because I miss my kids so bad. I hope to God that the end result makes all this crap worth it. I just really deserve it after all I've gone through. I know I've said this before but I REALLY need everyone's support right now..........I really do! Thanks to all of those that have been here for me through this! It means SO much to me!
But then the other day he proposed another surgery. THIS surgery scares the crap out of me. It's called a vagotomy. It is typically used for people that suffer from peptic ulcers. They go in there and cut the nerves. In the case of people with ulcers, it stops the acid pumps from producing acid. Well in my case he is hoping that by severing the nerves, it would stop the pain that's been going on in my pouch. Well I asked my surgeon if this would definitely stop the pain and he couldn't tell me for sure. He doesn't actually do this surgery so he was going to have the surgeon that does do this surgery come and talk to me and answer all my questions. Well, I told my husband today about this surgery and he said absolutely not. He does NOT want me to have this surgery. He said he's ok with the biopsy surgery but not the nerve severing surgery. Well I pretty much agreed with him because what if they sever those nerves and it doesn't stop the pain or it causes some other type of problems. I would be totally screwed and there wouldn't be any way to fix it.
So it looks like sometime this week I will be having surgery to do another biopsy on my intestines where all that white stuff is. They will actually be resecting part of it to biopsy and sewing my intestines back together. I hope and pray to God that this surgery goes well, that there's no complications and that we get some good definitive answers from this. I'm getting so majorly discouraged laying here day after day after day, missing out on my life, barely seeing my family. It's SO sad and it feels, at times, like someone is ripping my heart out because I miss my kids so bad. I hope to God that the end result makes all this crap worth it. I just really deserve it after all I've gone through. I know I've said this before but I REALLY need everyone's support right now..........I really do! Thanks to all of those that have been here for me through this! It means SO much to me!
Hospital Update
Oct 27, 2007
Post Date: 10/25/07 12:59 pm
Well wherever there was bleeding, seems to have stopped as I went to the bathroom a while ago and it looks like there's no more black diarrhea or stools.......although looks can be deceiving. My bp is SLOWLY coming back up. It went from 76/46 yesterday morning to 85/46 yesterday afternoon and then to like 95/51 early this morning....even though my pulse was in the 40's! BUT..........all of this with NO Doctor in site since I've been here. My doctor is out of town so his partner admitted me (but has yet to come around).
And HE decided to take me off my pain meds and put me on this Fentanyl patch. It works ok...........suprisingly. I can eat and drink my LOVELY full liquid diet so I guess that's a plus. I'm still on top of the nausea medication every 4 hours. I don't know what's making me so sick to my stomach still. Probably going cold turkey off my Dilaudid (pain meds). But the Zofran they have me on for nausea seems to be working ok.......so far.
Last night I was getting bags of potassium and my saline bag ran out but my potassium bag kept running.......OMG.......if you've ever experienced straight potassium going into your vein. I thought I was gonna pass out from the pain!!! Bad stuff.
Well hopefully sometime today I will see an actual doctor........at least they tell me I will. Ya'll have a good one!
Well wherever there was bleeding, seems to have stopped as I went to the bathroom a while ago and it looks like there's no more black diarrhea or stools.......although looks can be deceiving. My bp is SLOWLY coming back up. It went from 76/46 yesterday morning to 85/46 yesterday afternoon and then to like 95/51 early this morning....even though my pulse was in the 40's! BUT..........all of this with NO Doctor in site since I've been here. My doctor is out of town so his partner admitted me (but has yet to come around).
And HE decided to take me off my pain meds and put me on this Fentanyl patch. It works ok...........suprisingly. I can eat and drink my LOVELY full liquid diet so I guess that's a plus. I'm still on top of the nausea medication every 4 hours. I don't know what's making me so sick to my stomach still. Probably going cold turkey off my Dilaudid (pain meds). But the Zofran they have me on for nausea seems to be working ok.......so far.
Last night I was getting bags of potassium and my saline bag ran out but my potassium bag kept running.......OMG.......if you've ever experienced straight potassium going into your vein. I thought I was gonna pass out from the pain!!! Bad stuff.
Well hopefully sometime today I will see an actual doctor........at least they tell me I will. Ya'll have a good one!
WEll I got to spend 3 days with my family.........
Oct 27, 2007
Post Date: 10/24/07 11:40 am
Well I got readmitted to the hospital last night. I was feeling bad all weekend.......stomach was hurting ALL the time, I couldn't hold my meds down, couldn't eat or drink, even little sips of stuff were coming back up AND I woke up yesterday morning passing BLACK as tar diarrhea. Oh my gosh I felt SO HORRIBLE!!! So I'm back here. My potassium was low so they're supplementing that. I haven't seen the doctor yet, but he told me he was going to try to wean me off this high dose of pain meds. Suprisingly this patch I'm on right now is helping and I'm on Zofran for my nausea and vomiting.
I've had to drop out of school for the rest of this semester. I was getting too far behind and I need to concentrate on getting ME better. It was a hard decision but I did it. If anyone wants to call, the direct number to my room is 214-818-7520.
Well I got readmitted to the hospital last night. I was feeling bad all weekend.......stomach was hurting ALL the time, I couldn't hold my meds down, couldn't eat or drink, even little sips of stuff were coming back up AND I woke up yesterday morning passing BLACK as tar diarrhea. Oh my gosh I felt SO HORRIBLE!!! So I'm back here. My potassium was low so they're supplementing that. I haven't seen the doctor yet, but he told me he was going to try to wean me off this high dose of pain meds. Suprisingly this patch I'm on right now is helping and I'm on Zofran for my nausea and vomiting.
I've had to drop out of school for the rest of this semester. I was getting too far behind and I need to concentrate on getting ME better. It was a hard decision but I did it. If anyone wants to call, the direct number to my room is 214-818-7520.
Scope is done and.............
Oct 27, 2007
Post Date: 10/19/07 3:56 pm
I GET TO GO HOME!!!!!!!!!!!!! And yes, it's a done deal. No tease like last time. I'm for real going home TONIGHT!!!!!!! I'm so happy I can't stand it. My scope came back fine. This white stuff has NOT invaded the inside of my bowel.......thank GOD!! Now we just have to figure out why it's invading the outside of my bowel and we'll be alright. We haven't heard anything from the Dr. in Virginia either.
My doctor's partner wrote me enough meds to eat 2 meals a day for 5 days. (I'm sure I can stuff in 3 meals if I eat at the VERY beginning of the medicines effectiveness and then squash in one more meal right before it starts to wear off) He's going to be out of town next week so he authorized his partner to write me 1 more prescription while he's gone, so that's 10 days of 2 meals a day. I actually get to go home and be normal for 10 days!!!!!!!! I know that doesn't seem like a lot to some but it means the WORLD to me!
After my doctor gets back in town, I'm sure we'll be talking about tapering me down off these meds. I don't know yet if they're going to take the PICC line out. (I'm still in the hospital waiting for my discharge) It doesn't matter to me either way if they do or don't. I just know when I start tapering down off the meds, I won't be able to eat or drink very much if at all, so then I would definitely qualify for TPN under Medicare's rules. But when that time comes, if they decide to take my PICC line out now, I'll just get another PICC line. It was pretty easy getting this last one placed so I wouldn't mind them putting another one in.
So that's it. Just wanted to give you guys an update. Thanks for all the prayers for my scope! They were definitely heared and most definitely appreciated! You all have been SO supportive of me and although my battle is not over, I at least get a break for a while so I can be with my family and live half way normal for a little bit until the next "round" when I know you all will continue to be there for me through this nightmare..........and I appreciate it very much!
I GET TO GO HOME!!!!!!!!!!!!! And yes, it's a done deal. No tease like last time. I'm for real going home TONIGHT!!!!!!! I'm so happy I can't stand it. My scope came back fine. This white stuff has NOT invaded the inside of my bowel.......thank GOD!! Now we just have to figure out why it's invading the outside of my bowel and we'll be alright. We haven't heard anything from the Dr. in Virginia either.
My doctor's partner wrote me enough meds to eat 2 meals a day for 5 days. (I'm sure I can stuff in 3 meals if I eat at the VERY beginning of the medicines effectiveness and then squash in one more meal right before it starts to wear off) He's going to be out of town next week so he authorized his partner to write me 1 more prescription while he's gone, so that's 10 days of 2 meals a day. I actually get to go home and be normal for 10 days!!!!!!!! I know that doesn't seem like a lot to some but it means the WORLD to me!
After my doctor gets back in town, I'm sure we'll be talking about tapering me down off these meds. I don't know yet if they're going to take the PICC line out. (I'm still in the hospital waiting for my discharge) It doesn't matter to me either way if they do or don't. I just know when I start tapering down off the meds, I won't be able to eat or drink very much if at all, so then I would definitely qualify for TPN under Medicare's rules. But when that time comes, if they decide to take my PICC line out now, I'll just get another PICC line. It was pretty easy getting this last one placed so I wouldn't mind them putting another one in.
So that's it. Just wanted to give you guys an update. Thanks for all the prayers for my scope! They were definitely heared and most definitely appreciated! You all have been SO supportive of me and although my battle is not over, I at least get a break for a while so I can be with my family and live half way normal for a little bit until the next "round" when I know you all will continue to be there for me through this nightmare..........and I appreciate it very much!
Could use some prayers for tomorrow!!
Oct 27, 2007
Post Date: 10/18/07 7:39 pm
Hey everyone!
Well since I'm stuck in the hospital, my surgeon set me up with the GI guy to scope me again. We're gonna do that tomorrow at 1:00 I just found out. He's going to have him look to see if those white spots that are on the outside of my bowel have migrated to the inside of my bowel. He's also just going to be looking to see if there's any abnormalities at all. So, please pray for me that I come through that procedure fine with no complications.
I think there's a SLIGHT possibility that I'll get to go home sometime this weekend. I'm definitely not going to get my hopes up again like I did last time. But I'm going to hope like crazy that I DO get to go home on Saturday!!! I want to spend some time with my kids and my husband SO BAD I can't stand it! It's enough to drive me bonkers!
Well, I will update when I know something tomorrow. Maybe they'd be adventurous and let me out tomorrow night!! I could only hope!
Hey everyone!
Well since I'm stuck in the hospital, my surgeon set me up with the GI guy to scope me again. We're gonna do that tomorrow at 1:00 I just found out. He's going to have him look to see if those white spots that are on the outside of my bowel have migrated to the inside of my bowel. He's also just going to be looking to see if there's any abnormalities at all. So, please pray for me that I come through that procedure fine with no complications.
I think there's a SLIGHT possibility that I'll get to go home sometime this weekend. I'm definitely not going to get my hopes up again like I did last time. But I'm going to hope like crazy that I DO get to go home on Saturday!!! I want to spend some time with my kids and my husband SO BAD I can't stand it! It's enough to drive me bonkers!
Well, I will update when I know something tomorrow. Maybe they'd be adventurous and let me out tomorrow night!! I could only hope!
OMG I could SCREAM!!!
Oct 27, 2007
Post Date: 10/17/07 12:30 pm
I could dang well scream right now. I'm so freaking upset and sad and mad. This is WAY BEYOND NOT FAIR!!! I'm NOT going home now. Medicare didn't approve my TPN because I didn't require enough "calories". So no TPN and no going home for me. I don't know what we're going to do now because I haven't seen my doctor again yet. I'm so devastated right now I can't even begin to tell you.
I could dang well scream right now. I'm so freaking upset and sad and mad. This is WAY BEYOND NOT FAIR!!! I'm NOT going home now. Medicare didn't approve my TPN because I didn't require enough "calories". So no TPN and no going home for me. I don't know what we're going to do now because I haven't seen my doctor again yet. I'm so devastated right now I can't even begin to tell you.
I get to go HOME!!!!
Oct 27, 2007
Post Date: 10/17/07 7:33 am
I GET TO GO HOME!!!!!!!!!!!!
Yee freakin Ha! It's about time. I've been here for 16 days........the whole month of October so far. But I finally get to go home. I'm so excited and RELIEVED. He's got me a prescription of my pain meds from his partner that was out of the country and that should hopefully last me until my doctor gets his triplicate pad. They still haven't heard from the bariatric specialist guy. I found out that this guy is in Virginia. I sure hope he has some answers.
But in the mean time, he is going to set me up on TPN and he's going to schedule some out patient procedures as well to try and get some answers. First he's going to do a motility study which sounds just FABULOUSY FUN!! NOT! Sounds like a legal form of torture! No for real they put this tube down your nose into your pouch and you drink stuff while they measure the pressures down there (or something like that). Then he's going to schedule me for another endoscopy to see if those spots that are on my bowel have grown down into the inside of my bowel. It's all pretty scary but I'm willing to fight whatever I'm up against because I want my life back and my family deserves nothing less!
So that's it. Thank you all for the prayers and calls and emails of support. You really don't know how much it means to me! Just think, if you were in this situation how alone and isolated you would feel without any support. It really did help me in my times that I did feel alone and isolated. I'll tell ya, throughout this whole ordeal, you really find out who your friends are and who truly cares about you. I've also learned about the kindness of strangers. There are some truly good souls out there that don't know me from Adam, but call to check on me everyday just because they care. It really melts my heart and I DO try to pay that forward every chance I get. So thank you again! I love you guys!!
I GET TO GO HOME!!!!!!!!!!!!
Yee freakin Ha! It's about time. I've been here for 16 days........the whole month of October so far. But I finally get to go home. I'm so excited and RELIEVED. He's got me a prescription of my pain meds from his partner that was out of the country and that should hopefully last me until my doctor gets his triplicate pad. They still haven't heard from the bariatric specialist guy. I found out that this guy is in Virginia. I sure hope he has some answers.
But in the mean time, he is going to set me up on TPN and he's going to schedule some out patient procedures as well to try and get some answers. First he's going to do a motility study which sounds just FABULOUSY FUN!! NOT! Sounds like a legal form of torture! No for real they put this tube down your nose into your pouch and you drink stuff while they measure the pressures down there (or something like that). Then he's going to schedule me for another endoscopy to see if those spots that are on my bowel have grown down into the inside of my bowel. It's all pretty scary but I'm willing to fight whatever I'm up against because I want my life back and my family deserves nothing less!
So that's it. Thank you all for the prayers and calls and emails of support. You really don't know how much it means to me! Just think, if you were in this situation how alone and isolated you would feel without any support. It really did help me in my times that I did feel alone and isolated. I'll tell ya, throughout this whole ordeal, you really find out who your friends are and who truly cares about you. I've also learned about the kindness of strangers. There are some truly good souls out there that don't know me from Adam, but call to check on me everyday just because they care. It really melts my heart and I DO try to pay that forward every chance I get. So thank you again! I love you guys!!
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Nov 02, 2004
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