Guest guest Posted November 12, 2008 Report Share Posted November 12, 2008 Hi , A minute ago I converted 1,9 cm into feet and it's about 0,06 feet. So I guess that somehow it's exactly the same size we're talking about (well, at least that's a good thing, eh?). The procedure with the vertical cuts indeed is familiar to what my surgeon described to me a couple of weeks ago and it's the procedure that they are considering besides the stent now. You did a pretty good job explaining it in your post, , I understand your explanation of things. For as far as I know now, they prefer the stent above the surgical procedure (me too!), but it's a matter of wait and see. Even without extra procedures I would be fine in the end, though they think I might even do better when they do an extra procedure on me. There's more in it then they can get out right now. Earlier on I read about stents after an -ectomy as well, but the older types cause scar tissue at the endings of the stent in several cases and that's not what we're waiting for, eh? This problem would be solved by using the solvable stents that are pretty new, but my hospital has already used them on other -ectomy patients and it was a success. Before going for it, I do want to know more about it, so I am going to check the internet in a minute and of course I'll have my docs inform me. Thank you for your answer and sure I'll keep you posted on how things proceed. Love, Isabella ________________________________ From: michelle <mcnairmichelle@...> achalasia Sent: Wednesday, November 12, 2008 7:10:23 PM Subject: Isabella I have had dilations from my surgeon up to a size 60 dilator (not sure what measurement it is) and they have told me that's the highest they'll go for anyone. I have also had 'scraping' of my scar tissue done by him. Now that I'm almost a year out, they've told me that whenever I feel the need to come up again, they'll go in with a laser and make vertical cuts into the stricture to make it more pliable. What I visualize is like taking a thick rubber tube and cutting vertical slots on the inside - it would make it 'looser' and give it more give. Does that make sense? One of the minions explained it to me and in person he was able to describe it well, I'm not sure it goes so well trying to explain it here. Keep us posted on the stent thing - I have wondered if there wasn't some kind of option for that. I'll be curious to see how it goes for you. good luck, glad that you are able to do better between dilations. - in NC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2008 Report Share Posted November 26, 2008 Isabella, I'm so sorry to hear about your down turn. I remember those horrible hunger feelings before I had my dilatations and could keep nothing down. I hope they'll fine something to help you soon. , my aspiration pneumonia happened before I was diagnosed and I didn't know what was causing it. I'd wake up having a coughing fit, but had no idea what that was. After my dilatation, I slept flat again, and as the LES tightened I'd elevate the bed. Of course that question might have been only to the 'ectomy folks and I can't speak to that. Wishing you both the best, Maggie **************Life should be easier. So should your homepage. Try the NEW AOL.com. (http://www.aol.com/?optin=new-dp & icid=aolcom40vanity & ncid=emlcntaolcom00000002) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2008 Report Share Posted November 26, 2008 Hi , hi Maggie, Thanks for your concern! At the moment I indeed am a bit down. It's the fact that I am now 8 months post -ectomy and the progress I make in recovering is just way too slow. It's not only me saying that, it's the docs too... You know, it's not that I even out for a while to then get a boost. It's just that the progress goes sooooooo slooooowly. I am now 8 months post -ectomy and still need dilatations every other week! I lost count! Monday night I ate something, things got stuck and I wasn't able to drink a bit of water since (ok, well now of course I can eat again, had my dilatation this morning). The scar tissue my body forms is extreme and that's the cause of all this sh... Furthermore there must be something else going on. As the ferritine levels are way too low and I feel so tired and hungry all day long. Of course it can just be a matter of malnutrition, but even on my best days, when I really get plenty in (according to me that is), I stay hungry. Even after the best meal I can have, I still feel hungry afterwards. I get up feeling hungry, I go to bed feeling hungry. The only time I didn't feel like that and I felt full, when the little bit of stomach left was full, was during the days I had to take the antibiotics against slow gastric emptying. But I cannot take those all my life, eh? Need to have a good talk on that one with the specialist December 9th as well. As for the dilatations: I have had my dilatations done by several different G.I.'s in my hospital (I know them all by now and they all know me -LOL-). There is this no noticable differerence in their dilatations, unfortunately. I have asked them whether they could change the type of dilatation (e.g. width and balloon instead of bougies), but they cannot as it simply would get to dangerous. So now it's wait and see what the specialist on the newest technologies has to say. The G.I. I had this morning (who belongs to the top in Holland) told me today, that solvable stents didn't cause many complications, so he thought it indeed might be a good option in my case. But since he wasn't specialised in that area he didn't want to say too much about it, he leaves that up to his specialised collegue. That's a good thing in my opinion, as I don't want to get information that isn't completely correct. I think that once I get certainty about how and how soon the scar tissue problems are getting solved, as well as how we can deal with my 24/7 hunger and as soon as the anaemia has gone, I will feel better again. It's just that I want to go on with my life. I love to work and have returned for 4 hours a week, but really that's too much for me right now. I have this great project I am working on, it's my responsibility to get that project done, but I simply cannot do it right now. Luckily nobody (except for myself that is) is pushing me and my boss and collegues understand, but it is frustrating. Furthermore there are so many other things that I want to do, but my life has been standing somewhat still for about 2 years now and I want to move on and be able to live my life the way I want to and not the way my disease tells me to. Sorry if I sound negative. I am not depressed or anything, it's just what we call a " mega dip " over here in Holland. It will pass, as soon as I just get to feel a little bit better. I am still happy I had my surgery, it's just that recovering takes longer and works out different than I ever expected. When I eat nowadays and things aren't closed up, it's like a miracle. It would just be so nice if that miracle lasted longer than 10 days post dilatation. And that time will come. I know I am not the most patient person here on earth, but I guess they are teaching me a pretty good lesson on how to become one, eh? Oh, and about the elevated sleeping... I cannot even remember when I last slept flat, as I always sleep elevated. Especially nowadays after the -ectomy, since I've been told that aspiration can always happen now that there is an open mouth/stomach connection (well not always open in my case that is -LOL-). I also have yearly flu shots as of last year, I don't know whether or not that helps me, as ever since last year lots of other things have happened to me healthwise as well, of course. Love, Isabella ________________________________ From: " LunaIam2@... " <LunaIam2@...> achalasia Sent: Wednesday, November 26, 2008 3:16:07 PM Subject: Re: Isabella Isabella, I'm so sorry to hear about your down turn. I remember those horrible hunger feelings before I had my dilatations and could keep nothing down. I hope they'll fine something to help you soon. , my aspiration pneumonia happened before I was diagnosed and I didn't know what was causing it. I'd wake up having a coughing fit, but had no idea what that was. After my dilatation, I slept flat again, and as the LES tightened I'd elevate the bed. Of course that question might have been only to the 'ectomy folks and I can't speak to that. Wishing you both the best, Maggie ************ **Life should be easier. So should your homepage. Try the NEW AOL.com. (http://www.aol. com/?optin= new-dp & icid= aolcom40vanity & ncid=emlcntaolco m00000002) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2008 Report Share Posted November 26, 2008 Dear Isabella, Sorry to hear you are in a " mega dip " and I hope that you pull out of it and things feel better. What we go through may not be considered life threatening in the wider medical picture, but years of not eating properly can wear you down as water can slowly wear away rock. I too have problems with Anemia - recently my Ferritin levels went down to just 2 and I had to have a blood transfusion. I wonder if food is being broken down in my esophagus rather than my stomach and the nutrients are not being absorbed properly. I take iron tablets but still feel a sort of drunken tiredness on bad days. Oddly enough I am eating quite well at the moment and putting on some weight. I am seeing my surgeon - Nick Maynard on the 8th of Dec and will probably sound him out about putting my 'ectomy on hold for a bit as things are going quite well. Hope you feel better soon and need fewer stretches. Regards tim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2008 Report Share Posted November 27, 2008 Hi Isabella I am now 4 years post ectomy and still find that I need the occasional dilatation. Sad isn't it? Had a swab done from my J-Tube stoma site and yes once again I have MRSA there. My J-Tube needs replacing as the tube leaks badly whenever I swallow anything remotely solid (including milky foods). I have been given some antibiotics to try against the infection but my GP doesn't hold out much hope that they will work. I am trying to arrange to have a replacement J-Tube but with it bleeding a little each time it gets replaced the bug may get into my blood and I may have to be admitted into hospital to receive Vancomycin intramuscularly. I feel a bit weepy as I am unable to swallow anything solid only something sloppy like soup or liquids. Sorry, I am rambling on a bit. I am also waiting for a Flexible Sigmoidoscopy and a Gastrectomy for a dilation of my ectomy scar tissue which is still bad, there is a lot there. ________________________________ From: Isabella Arnold <arnoldisabella@...> achalasia Sent: Wednesday, November 26, 2008 3:35:43 PM Subject: Re: Isabella Hi , hi Maggie, Thanks for your concern! At the moment I indeed am a bit down. It's the fact that I am now 8 months post -ectomy and the progress I make in recovering is just way too slow. It's not only me saying that, it's the docs too... You know, it's not that I even out for a while to then get a boost. It's just that the progress goes sooooooo slooooowly. I am now 8 months post -ectomy and still need dilatations every other week! I lost count! Monday night I ate something, things got stuck and I wasn't able to drink a bit of water since (ok, well now of course I can eat again, had my dilatation this morning). The scar tissue my body forms is extreme and that's the cause of all this sh... Furthermore there must be something else going on. As the ferritine levels are way too low and I feel so tired and hungry all day long. Of course it can just be a matter of malnutrition, but even on my best days, when I really get plenty in (according to me that is), I stay hungry. Even after the best meal I can have, I still feel hungry afterwards. I get up feeling hungry, I go to bed feeling hungry. The only time I didn't feel like that and I felt full, when the little bit of stomach left was full, was during the days I had to take the antibiotics against slow gastric emptying. But I cannot take those all my life, eh? Need to have a good talk on that one with the specialist December 9th as well. As for the dilatations: I have had my dilatations done by several different G.I.'s in my hospital (I know them all by now and they all know me -LOL-). There is this no noticable differerence in their dilatations, unfortunately. I have asked them whether they could change the type of dilatation (e.g. width and balloon instead of bougies), but they cannot as it simply would get to dangerous. So now it's wait and see what the specialist on the newest technologies has to say. The G.I. I had this morning (who belongs to the top in Holland) told me today, that solvable stents didn't cause many complications, so he thought it indeed might be a good option in my case. But since he wasn't specialised in that area he didn't want to say too much about it, he leaves that up to his specialised collegue. That's a good thing in my opinion, as I don't want to get information that isn't completely correct. I think that once I get certainty about how and how soon the scar tissue problems are getting solved, as well as how we can deal with my 24/7 hunger and as soon as the anaemia has gone, I will feel better again. It's just that I want to go on with my life. I love to work and have returned for 4 hours a week, but really that's too much for me right now. I have this great project I am working on, it's my responsibility to get that project done, but I simply cannot do it right now. Luckily nobody (except for myself that is) is pushing me and my boss and collegues understand, but it is frustrating. Furthermore there are so many other things that I want to do, but my life has been standing somewhat still for about 2 years now and I want to move on and be able to live my life the way I want to and not the way my disease tells me to. Sorry if I sound negative. I am not depressed or anything, it's just what we call a " mega dip " over here in Holland. It will pass, as soon as I just get to feel a little bit better. I am still happy I had my surgery, it's just that recovering takes longer and works out different than I ever expected. When I eat nowadays and things aren't closed up, it's like a miracle. It would just be so nice if that miracle lasted longer than 10 days post dilatation. And that time will come. I know I am not the most patient person here on earth, but I guess they are teaching me a pretty good lesson on how to become one, eh? Oh, and about the elevated sleeping... I cannot even remember when I last slept flat, as I always sleep elevated. Especially nowadays after the -ectomy, since I've been told that aspiration can always happen now that there is an open mouth/stomach connection (well not always open in my case that is -LOL-). I also have yearly flu shots as of last year, I don't know whether or not that helps me, as ever since last year lots of other things have happened to me healthwise as well, of course. Love, Isabella ____________ _________ _________ __ From: " LunaIam2aol (DOT) com " <LunaIam2aol (DOT) com> achalasia@grou ps.com Sent: Wednesday, November 26, 2008 3:16:07 PM Subject: Re: Isabella Isabella, I'm so sorry to hear about your down turn. I remember those horrible hunger feelings before I had my dilatations and could keep nothing down. I hope they'll fine something to help you soon. , my aspiration pneumonia happened before I was diagnosed and I didn't know what was causing it. I'd wake up having a coughing fit, but had no idea what that was. After my dilatation, I slept flat again, and as the LES tightened I'd elevate the bed. Of course that question might have been only to the 'ectomy folks and I can't speak to that. Wishing you both the best, Maggie ************ **Life should be easier. So should your homepage. Try the NEW AOL.com. (http://www.aol. com/?optin= new-dp & icid= aolcom40vanity & ncid=emlcntaolco m00000002) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2008 Report Share Posted November 27, 2008 Hi Tim, Thanks for your post. So glad to hear that you are doing a bit better right now and that you are putting on some weight. You can use every bit of weight before going in for your -ectomy. Hopefully you indeed can postpone the thing a bit, but if you need to have it, it's better to have it over and done with. I hope I don't scare you too much with the things I write about my recovering? You know, everybody is different and heals different. On the other hand I think it's better to be prepared for what you might be headed for instead of getting the surpise I got afterwards. I never expected things to get this tough. But it's good to know upfront you might be facing it AND (even more important) that things WILL work out all right in the end, no matter how hard that year of healing might be. Never forget that, it's hard to believe sometimes (pffffft, tell me something), but it is going to be better in the end. I keep hanging on to that thought and I know I'm right in doing that. It's a matter of being patient (again...). The anaemia thing I really don't understand. I've been thinking about the malabsorbtion as well. Something like that simply must be going on. I cannot think of any other reason. Why would I otherwise stay hungry all day long, even when I've aten enough? I promised myself not to think about it anymore and to just ask ahead when I see my specialist Dec. 9th. Boy, do I have a list of questions for him! Hopefully things will keep going as well with you as they have lately! Let us know what your doc says, OK? Love, Isabella From: timwilson12 <timwilson12@...> Subject: Re: Isabella achalasia Date: Wednesday, November 26, 2008, 6:24 PM Dear Isabella, Sorry to hear you are in a " mega dip " and I hope that you pull out of it and things feel better. What we go through may not be considered life threatening in the wider medical picture, but years of not eating properly can wear you down as water can slowly wear away rock. I too have problems with Anemia - recently my Ferritin levels went down to just 2 and I had to have a blood transfusion. I wonder if food is being broken down in my esophagus rather than my stomach and the nutrients are not being absorbed properly. I take iron tablets but still feel a sort of drunken tiredness on bad days. Oddly enough I am eating quite well at the moment and putting on some weight. I am seeing my surgeon - Nick Maynard on the 8th of Dec and will probably sound him out about putting my 'ectomy on hold for a bit as things are going quite well. Hope you feel better soon and need fewer stretches. Regards tim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2008 Report Share Posted November 27, 2008 Hi , Indeed it is sad that you still need those dilatations and still aren't doing OK. I wish you had doctors who took better care of you. Sure, I have a long road ahead of me, but I have docs who try it all and work so hard for me. I only wish you had that care as well... Today I am doing better mentally, though it is so rough. It's a longer and rougher road to get better than I ever imagined it to be. Why does it all have to take so long and why do I have to keep running to those docs over and over again, it's so tiring. On the other hand I know and feel things will work out in the end. It's going to be worth it, I get to taste a bit of the future after each dilatation I have and I know someday soon the profits of the surgery will finally last. I've been promised that and my docs will stick to their promises, they are sincere and I completely trust them. I feel like a whimp, when I compare myself to your case! I am just 8 months post -ectomy and complaining, pffffft, if I just begin to imagine how you must be feeling right now. Is it really not possible for you to get into the hands of docs that take better care of you and that act as soon as it's needed and not only when it suits them? I wish you so much strength!!! Love, Isabella ________________________________ From: Hulmes <christine.hulmes@...> achalasia Sent: Thursday, November 27, 2008 2:32:57 PM Subject: Re: Isabella Hi Isabella I am now 4 years post ectomy and still find that I need the occasional dilatation. Sad isn't it? Had a swab done from my J-Tube stoma site and yes once again I have MRSA there. My J-Tube needs replacing as the tube leaks badly whenever I swallow anything remotely solid (including milky foods). I have been given some antibiotics to try against the infection but my GP doesn't hold out much hope that they will work. I am trying to arrange to have a replacement J-Tube but with it bleeding a little each time it gets replaced the bug may get into my blood and I may have to be admitted into hospital to receive Vancomycin intramuscularly. I feel a bit weepy as I am unable to swallow anything solid only something sloppy like soup or liquids. Sorry, I am rambling on a bit. I am also waiting for a Flexible Sigmoidoscopy and a Gastrectomy for a dilation of my ectomy scar tissue which is still bad, there is a lot there. ____________ _________ _________ __ From: Isabella Arnold <arnoldisabella> achalasia@grou ps.com Sent: Wednesday, November 26, 2008 3:35:43 PM Subject: Re: Isabella Hi , hi Maggie, Thanks for your concern! At the moment I indeed am a bit down. It's the fact that I am now 8 months post -ectomy and the progress I make in recovering is just way too slow. It's not only me saying that, it's the docs too... You know, it's not that I even out for a while to then get a boost. It's just that the progress goes sooooooo slooooowly. I am now 8 months post -ectomy and still need dilatations every other week! I lost count! Monday night I ate something, things got stuck and I wasn't able to drink a bit of water since (ok, well now of course I can eat again, had my dilatation this morning). The scar tissue my body forms is extreme and that's the cause of all this sh... Furthermore there must be something else going on. As the ferritine levels are way too low and I feel so tired and hungry all day long. Of course it can just be a matter of malnutrition, but even on my best days, when I really get plenty in (according to me that is), I stay hungry. Even after the best meal I can have, I still feel hungry afterwards. I get up feeling hungry, I go to bed feeling hungry. The only time I didn't feel like that and I felt full, when the little bit of stomach left was full, was during the days I had to take the antibiotics against slow gastric emptying. But I cannot take those all my life, eh? Need to have a good talk on that one with the specialist December 9th as well. As for the dilatations: I have had my dilatations done by several different G.I.'s in my hospital (I know them all by now and they all know me -LOL-). There is this no noticable differerence in their dilatations, unfortunately. I have asked them whether they could change the type of dilatation (e.g. width and balloon instead of bougies), but they cannot as it simply would get to dangerous. So now it's wait and see what the specialist on the newest technologies has to say. The G.I. I had this morning (who belongs to the top in Holland) told me today, that solvable stents didn't cause many complications, so he thought it indeed might be a good option in my case. But since he wasn't specialised in that area he didn't want to say too much about it, he leaves that up to his specialised collegue. That's a good thing in my opinion, as I don't want to get information that isn't completely correct. I think that once I get certainty about how and how soon the scar tissue problems are getting solved, as well as how we can deal with my 24/7 hunger and as soon as the anaemia has gone, I will feel better again. It's just that I want to go on with my life. I love to work and have returned for 4 hours a week, but really that's too much for me right now. I have this great project I am working on, it's my responsibility to get that project done, but I simply cannot do it right now. Luckily nobody (except for myself that is) is pushing me and my boss and collegues understand, but it is frustrating. Furthermore there are so many other things that I want to do, but my life has been standing somewhat still for about 2 years now and I want to move on and be able to live my life the way I want to and not the way my disease tells me to. Sorry if I sound negative. I am not depressed or anything, it's just what we call a " mega dip " over here in Holland. It will pass, as soon as I just get to feel a little bit better. I am still happy I had my surgery, it's just that recovering takes longer and works out different than I ever expected. When I eat nowadays and things aren't closed up, it's like a miracle. It would just be so nice if that miracle lasted longer than 10 days post dilatation. And that time will come. I know I am not the most patient person here on earth, but I guess they are teaching me a pretty good lesson on how to become one, eh? Oh, and about the elevated sleeping... I cannot even remember when I last slept flat, as I always sleep elevated. Especially nowadays after the -ectomy, since I've been told that aspiration can always happen now that there is an open mouth/stomach connection (well not always open in my case that is -LOL-). I also have yearly flu shots as of last year, I don't know whether or not that helps me, as ever since last year lots of other things have happened to me healthwise as well, of course. Love, Isabella ____________ _________ _________ __ From: " LunaIam2aol (DOT) com " <LunaIam2aol (DOT) com> achalasia@grou ps.com Sent: Wednesday, November 26, 2008 3:16:07 PM Subject: Re: Isabella Isabella, I'm so sorry to hear about your down turn. I remember those horrible hunger feelings before I had my dilatations and could keep nothing down. I hope they'll fine something to help you soon. , my aspiration pneumonia happened before I was diagnosed and I didn't know what was causing it. I'd wake up having a coughing fit, but had no idea what that was. After my dilatation, I slept flat again, and as the LES tightened I'd elevate the bed. Of course that question might have been only to the 'ectomy folks and I can't speak to that. Wishing you both the best, Maggie ************ **Life should be easier. So should your homepage. Try the NEW AOL.com. (http://www.aol. com/?optin= new-dp & icid= aolcom40vanity & ncid=emlcntaolco m00000002) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2008 Report Share Posted November 28, 2008 Hi Isabella Thank you for your ever so kind and thoughtfull e-mail. I am glad that like me you think posative about your future health. You may e-mail me anytime to share any thoughts that you have. I hope that things pick up for you soon.You cheer me up no end and because of reading the posts in this group, i know that I am not alone. But I take each day at a time knowing that like you things will (of that I am determined) settle down. But hey what can I do but deal with each problem as it comes along. Thanks to you and everyone else in the group I think posative thoughts when dealing with problems. Want to hear the latest? As I have an MRSA infection within my J-Tube stoma I have been refused another replacement J-Tube to replace my leaking one. The Gastro Spcialist Nurse who changes the tubes for me flately refuses to change the badly leaking tube that I have and has arranged for me to see my GI specialist (who is an old friend of mine and understands the problems that I have) and will see me when I turn up for my appointment in 2 weeks. The Gastro Specialist Nurse will recomend to the GI doc that I be referred back to the surgeon who put my original J-Tube in surgicaly for a better more deeply seated J-Tube to be inderted in a place at a little further along my small intestine togive my present stoma a chance to heal. This surgeon has told me in the past that there is another more different longer J-Tube available and is keeping this option for the future and my Gastro Specialist Nurse now thinks that I need this tube. Also there is the leaking bile situation to take into acount when it will be decided on whether to resite my J-Tube or not. When I was told all this on the phone yesterday afternoon I must admit to getting a bit weepy. The appointment letter to see the Gastro Specialist Nurse along with the GI doc for emergancy consultation is in the post and should arrive ASAP. God I am rambling again. Sorry. ________________________________ From: Isabella Arnold <arnoldisabella@...> achalasia Sent: Thursday, November 27, 2008 7:33:23 PM Subject: Re: Isabella Hi , Indeed it is sad that you still need those dilatations and still aren't doing OK. I wish you had doctors who took better care of you. Sure, I have a long road ahead of me, but I have docs who try it all and work so hard for me. I only wish you had that care as well... Today I am doing better mentally, though it is so rough. It's a longer and rougher road to get better than I ever imagined it to be. Why does it all have to take so long and why do I have to keep running to those docs over and over again, it's so tiring. On the other hand I know and feel things will work out in the end. It's going to be worth it, I get to taste a bit of the future after each dilatation I have and I know someday soon the profits of the surgery will finally last. I've been promised that and my docs will stick to their promises, they are sincere and I completely trust them. I feel like a whimp, when I compare myself to your case! I am just 8 months post -ectomy and complaining, pffffft, if I just begin to imagine how you must be feeling right now. Is it really not possible for you to get into the hands of docs that take better care of you and that act as soon as it's needed and not only when it suits them? I wish you so much strength!!! Love, Isabella ____________ _________ _________ __ From: Hulmes <christine.hulmes> achalasia@grou ps.com Sent: Thursday, November 27, 2008 2:32:57 PM Subject: Re: Isabella Hi Isabella I am now 4 years post ectomy and still find that I need the occasional dilatation. Sad isn't it? Had a swab done from my J-Tube stoma site and yes once again I have MRSA there. My J-Tube needs replacing as the tube leaks badly whenever I swallow anything remotely solid (including milky foods). I have been given some antibiotics to try against the infection but my GP doesn't hold out much hope that they will work. I am trying to arrange to have a replacement J-Tube but with it bleeding a little each time it gets replaced the bug may get into my blood and I may have to be admitted into hospital to receive Vancomycin intramuscularly. I feel a bit weepy as I am unable to swallow anything solid only something sloppy like soup or liquids. Sorry, I am rambling on a bit. I am also waiting for a Flexible Sigmoidoscopy and a Gastrectomy for a dilation of my ectomy scar tissue which is still bad, there is a lot there. ____________ _________ _________ __ From: Isabella Arnold <arnoldisabella> achalasia@grou ps.com Sent: Wednesday, November 26, 2008 3:35:43 PM Subject: Re: Isabella Hi , hi Maggie, Thanks for your concern! At the moment I indeed am a bit down. It's the fact that I am now 8 months post -ectomy and the progress I make in recovering is just way too slow. It's not only me saying that, it's the docs too... You know, it's not that I even out for a while to then get a boost. It's just that the progress goes sooooooo slooooowly. I am now 8 months post -ectomy and still need dilatations every other week! I lost count! Monday night I ate something, things got stuck and I wasn't able to drink a bit of water since (ok, well now of course I can eat again, had my dilatation this morning). The scar tissue my body forms is extreme and that's the cause of all this sh... Furthermore there must be something else going on. As the ferritine levels are way too low and I feel so tired and hungry all day long. Of course it can just be a matter of malnutrition, but even on my best days, when I really get plenty in (according to me that is), I stay hungry. Even after the best meal I can have, I still feel hungry afterwards. I get up feeling hungry, I go to bed feeling hungry. The only time I didn't feel like that and I felt full, when the little bit of stomach left was full, was during the days I had to take the antibiotics against slow gastric emptying. But I cannot take those all my life, eh? Need to have a good talk on that one with the specialist December 9th as well. As for the dilatations: I have had my dilatations done by several different G.I.'s in my hospital (I know them all by now and they all know me -LOL-). There is this no noticable differerence in their dilatations, unfortunately. I have asked them whether they could change the type of dilatation (e.g. width and balloon instead of bougies), but they cannot as it simply would get to dangerous. So now it's wait and see what the specialist on the newest technologies has to say. The G.I. I had this morning (who belongs to the top in Holland) told me today, that solvable stents didn't cause many complications, so he thought it indeed might be a good option in my case. But since he wasn't specialised in that area he didn't want to say too much about it, he leaves that up to his specialised collegue. That's a good thing in my opinion, as I don't want to get information that isn't completely correct. I think that once I get certainty about how and how soon the scar tissue problems are getting solved, as well as how we can deal with my 24/7 hunger and as soon as the anaemia has gone, I will feel better again. It's just that I want to go on with my life. I love to work and have returned for 4 hours a week, but really that's too much for me right now. I have this great project I am working on, it's my responsibility to get that project done, but I simply cannot do it right now. Luckily nobody (except for myself that is) is pushing me and my boss and collegues understand, but it is frustrating. Furthermore there are so many other things that I want to do, but my life has been standing somewhat still for about 2 years now and I want to move on and be able to live my life the way I want to and not the way my disease tells me to. Sorry if I sound negative. I am not depressed or anything, it's just what we call a " mega dip " over here in Holland. It will pass, as soon as I just get to feel a little bit better. I am still happy I had my surgery, it's just that recovering takes longer and works out different than I ever expected. When I eat nowadays and things aren't closed up, it's like a miracle. It would just be so nice if that miracle lasted longer than 10 days post dilatation. And that time will come. I know I am not the most patient person here on earth, but I guess they are teaching me a pretty good lesson on how to become one, eh? Oh, and about the elevated sleeping... I cannot even remember when I last slept flat, as I always sleep elevated. Especially nowadays after the -ectomy, since I've been told that aspiration can always happen now that there is an open mouth/stomach connection (well not always open in my case that is -LOL-). I also have yearly flu shots as of last year, I don't know whether or not that helps me, as ever since last year lots of other things have happened to me healthwise as well, of course. Love, Isabella ____________ _________ _________ __ From: " LunaIam2aol (DOT) com " <LunaIam2aol (DOT) com> achalasia@grou ps.com Sent: Wednesday, November 26, 2008 3:16:07 PM Subject: Re: Isabella Isabella, I'm so sorry to hear about your down turn. I remember those horrible hunger feelings before I had my dilatations and could keep nothing down. I hope they'll fine something to help you soon. , my aspiration pneumonia happened before I was diagnosed and I didn't know what was causing it. I'd wake up having a coughing fit, but had no idea what that was. After my dilatation, I slept flat again, and as the LES tightened I'd elevate the bed. Of course that question might have been only to the 'ectomy folks and I can't speak to that. Wishing you both the best, Maggie ************ **Life should be easier. So should your homepage. Try the NEW AOL.com. (http://www.aol.. com/?optin= new-dp & icid= aolcom40vanity & ncid=emlcntaolco m00000002) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2008 Report Share Posted December 15, 2008 FYI I think it was Tonia () who recommended steroids to reduce scar tissue? My local GI who was doing my dilations would inject steroids (Kenalog) into the scar tissue but I'm not sure it was very helpful. When he first did it, I called Dr. Luketichs office and they didn't tell me not to but said that they didn't do that anymore as they found it ineffective. - in NC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2008 Report Share Posted December 30, 2008 Dear Ann and dear Pippa, Thank you for your reactions to my down post of yesterday. I am really doing a lot better today. Having a nice day with the boys helped me a lot, getting out of the holiday thing and the eating thing, just having fun with the boys. It also helps me a lot knowing that I am about to get rid of that d... scar tissue of mine. Even though I am somewhat frightened to go in next week, I am so much looking forward to it! It might finally be the solution to the troubles I've been facing these last 9 months. It's good indeed to have my family around, who doesn't feel pity for me, but understands the situation. Having friends like you helps a whole lot as well and it's so good to be able to " talk " to you and show my true feelings to you. I rather don't show it to my family (sure Romeo knows, but I don't think as well as you do, I never show as much to him my true feelings regarding this all as I do to you). I think I wrote it in a post to last week as well. Over here in Holland there is this national foundation for stomach, liver and intestines diseases. This foundation collected money this summer and part of the money they collected was used to lounch a website for esophagael cancer, the website also includes a board. It's been lounched about one or two months ago and I am a member of the board. It's good to be a member on that board, as there are plenty of -ectomy patients on the board and they are all Dutch and the -ectomies are almost all performed in the same way and we share the same kind of care given over here in Holland. Though I don't have cancer (thank God!), it feels good to share post -ectomy experiences on that board. It's also good to know that doctors founded the site (one of my doctors also) and they learn from the experiences bundled on the board. It seems that there are huge differences in hospitals over here (as if we achalasians didn't already know, eh?) and we can now warn the future -ectomy patients better concerning the " do's " and " don'ts " . Though sharing experiences with other -ectomy patients here on the board has helped me so much already, I can only say that it is so very wonderfull to now be able to share experiences with so many others from my own country. I always thought it would be very different to have an -ectomy done for achalasia or for cancer, but of course that's only the pre-surgery road. After the surgery we face about the same troubles, though my fears differ from theirs of course. It's strange and nice to see how people respond to things... I've always been so happy for my -ectomy to be done " only " for achalasia and not for cancer. Happy to not have to fear death and what future holds in store cancer wise. Now I got reactions on the board from cancer patients who say they are so gratefull to have been able to swallow normally before the cancer started. Most of them are somewhat elder and they have lived a fairly huge part of their life with normal digestion and they seem all the more happy about that, now that they know that there are many others out here who aren't able to do so. It's always good to see what's happening on the other side of the road, eh? Honest, I count my blessings and today I am very happy about how I am doing and about the fact that my scar tissue problems are about to end! Sure the road ahead is still not going to be easy, but I today I remembered why I chose my surgery and I remembered I promised myself to fight, stay positive and never give up. I am going to make it and this coming year is going to be my year, finally back to being healthy and normal. Lots of love, Isabella ________________________________ From: Ann Higgs <lilac_blossom_lady@...> Host Achalasia <achalasia > Sent: Tuesday, December 30, 2008 6:05:03 PM Subject: Isabella Dear, dear Isabella,  As you know, I am not able to offer any medical advice or even experience, but I CAN offer you my love and thoughts.  I see that you are back to your positive-thinking self and I am glad about that, but please do not be too hard on yourself when you cry and feel bad. You need those times to clear away some of the frustration and sadness that you have a perfect right to feel.  I am glad that you have your brother-in-law' s admiration. I know that he cannot possibly understand exactly what you have to contend with, but every bit of support is welcome, when it feels as if the world is caving in on you. And admiration feels a lot nicer than pity.  Just always know that you have friends here who will always be on your side and wish you the very best. I see you are counting the days to January 7th. You deserve the best of outcomes, you really do. I and many more here are rooting for you.  With big hugs from Ann (across the cold North Sea!) XX Quote Link to comment Share on other sites More sharing options...
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