Guest guest Posted May 18, 2009 Report Share Posted May 18, 2009 I have post surgery Edema I gained 15 pounds in water weight in my legs. I can't see my knees or my ankles. They blew up like a balloon looking like they need to pop. My GI said that this is due to a couple of reasons; 1) Very low Albumin blood values 2) Surgery 3) Being on Steroids before, during and after surgery but he cannot take me off of it for surgery as he thought that would be irresponsible 4) Being pumped with IV fluids in hospital but he understood their reasoning as at times my blood pressure was very very low at times dangerously low. I need to take a phosphorous friendly diuretic. If that does not work he will put me on one that depletes phosphorous and add a phosphorous supplement. I am also supposed to eat more in general (kind of hard after colon surgery) use less salt and try and elevate my feet when laying down although elevating my feet hurts post surgery. The other thing is to just keep walking. I am always pumped with way too much fluids in hospital. This happened with my bowel obstruction too but I walked a lot and bounced back. This time it's kind of hard having had major surgery LOL. My GI also examined me today and the swelling I thought I had on my vagina is actual bruising. He said that I have quite a bit of bruising from the surgery as they must of really moved instruments in there (I had this done laparoscopically) and he is truly pleased with the level of craftsmanship. I am happy too. Apparently it is a beautiful surgery Keeping you folks updated don't want to be a drain or a bummer. Actually feeling much better today. My brother changed my pain patch and as a result I need a lot less pain medication. It turns out the nurse also screwed putting my patch on as I was not feeling the full effect of it at all. I didn't pay too much attention to these details in the hospital because by this time I was kind of out of it. Suddenly today in the morning I am having hardly any trouble walking still like limping and " holding " my belly but no sudden death pains. Turns out that in the hospital the nurse dropped my patch on the floor and lifted it up and put extra tape on it. My brother kept asking if this is ok and she said " yes " . He thinks she screwed this up too. My GI said my first nurse didn't speak English and the second nurse was stupid. He said this is becoming more and more of a problem with Health Care in America. No in country talent, young docs don't want to do the amount of work with patients. Many medical staff that don't speak the language etc. Such a pitty. Jodi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2009 Report Share Posted May 18, 2009 Jodi, I think once you are up and about the edema will go down. When my dad had surgery a few years ago, many of his docs were from another country and all the nurses had English as a second language. It was really frustrating for him. His doc was a pretty woman from India who took great care of him. He did not mind that, but not being able to talk to the nurses was tough. PJ > > I have post surgery Edema > I gained 15 pounds in water weight in my legs. I can't see my knees or my ankles. They blew up like a balloon looking like they need to pop. > > My GI said that this is due to a couple of reasons; > 1) Very low Albumin blood values > 2) Surgery > 3) Being on Steroids before, during and after surgery but he cannot take me off of it for surgery as he thought that would be irresponsible > 4) Being pumped with IV fluids in hospital but he understood their reasoning as at times my blood pressure was very very low at times dangerously low. > > I need to take a phosphorous friendly diuretic. If that does not work he will put me on one that depletes phosphorous and add a phosphorous supplement. > > I am also supposed to eat more in general (kind of hard after colon surgery) use less salt and try and elevate my feet when laying down although elevating my feet hurts post surgery. > > The other thing is to just keep walking. > > I am always pumped with way too much fluids in hospital. This happened with my bowel obstruction too but I walked a lot and bounced back. This time it's kind of hard having had major surgery LOL. > > My GI also examined me today and the swelling I thought I had on my vagina is actual bruising. He said that I have quite a bit of bruising from the surgery as they must of really moved instruments in there (I had this done laparoscopically) and he is truly pleased with the level of craftsmanship. I am happy too. Apparently it is a beautiful surgery > > Keeping you folks updated don't want to be a drain or a bummer. > > Actually feeling much better today. My brother changed my pain patch and as a result I need a lot less pain medication. It turns out the nurse also screwed putting my patch on as I was not feeling the full effect of it at all. I didn't pay too much attention to these details in the hospital because by this time I was kind of out of it. Suddenly today in the morning I am having hardly any trouble walking still like limping and " holding " my belly but no sudden death pains. Turns out that in the hospital the nurse dropped my patch on the floor and lifted it up and put extra tape on it. My brother kept asking if this is ok and she said " yes " . He thinks she screwed this up too. > > My GI said my first nurse didn't speak English and the second nurse was stupid. He said this is becoming more and more of a problem with Health Care in America. No in country talent, young docs don't want to do the amount of work with patients. Many medical staff that don't speak the language etc. > > Such a pitty. > > Jodi > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2009 Report Share Posted May 18, 2009 At 12:34 PM 5/18/2009, you wrote: I have post surgery Edema I gained 15 pounds in water weight in my legs. I can't see my knees or my ankles. They blew up like a balloon looking like they need to pop. I'm still dealing with it -- mainly because they removed some of the lymph nodes for biopsy, and that screws up the circulation. If you can, try lying flat (well, with a pillow under your head) on the bed, on your back. Breath gently but deeply a half dozen counts. Now slide your right foot towards you so your knee is bent at about 90 degrees. Slide your foot away so your leg returned to the flat position. Repeat with left foot. Repeat above 5 times, if you can. Tighten and flatten your knees -- kind of like you were standing with your knees locked five times. Rotate your feet around your ankles five time, clockwise, then counter clockwise. Squeeze your toes together, kind of like you were trying to pick something up with your foot, five times. Stretch your toes as far apart from each other as you can, five times. Repeat ankle rotation. Repeat knee flattening. Repeat knee lifts. Now tighten the vagina -- similar to Kegel exercises, if you know of those, five times. Stroke very gently across your abdomen and stomach, then up your sides to the armpits. This helps get the fluids from the lower legs circulating. The lymph nodes in your abdomen may be on strike because of the surgery, so you push the fluids to where the nodes under your arms can circulate them. You may find you have to pee within a few minutes of doing this. These were given to me by a lymphedema specialist. Other useful exercises (which I was given my the physical therapist... I was doing these the week after my surgery): Hold your arms out in front. Slowly drop them to your sides, then raise them again. Repeat five times. Hold your arms in front. Pull your right arm back towards you. Re-extend it while pulling your left arms back towards to. Repeat five times. Sitting in a chair, push your heels up so your feet are in a position as if you were wearing super-spike heals. Lower your heels to the floor. Repeat five times. Reverse, and try to point your toes to the ceiling while keeping your heels on the ground. Repeat five times. Standing, palms against your sides, bend sideways a little -- if it hurts, don't do it very far. Reverse and do the other side. Repeat five times. Sitting in the chair, kick your right leg out in front of you so it is level. Do the left leg. Repeat both five times. Sitting in the chair, shrug first one shoulder forward, then the other, as if you were trying to point to something with your shoulder. Repeat five times. Sitting in the chair, with a sturdy ottoman in front of you, place one foot on the ottoman. Swing your leg to the side in an arc, using the ottoman to support your leg. Repeat five times. Do the other leg. Swing your arms across in front of each other, controlled. Cross your arms, then separate them out to the sides, then cross them in front. Repeat five times. Still sitting in the chair with your foot on the ottoman, slide your foot towards you (similar to the exercise in the first section). Slide it out again so your leg is flat. Repeat with other leg. Repeat five times. Roll your head from side to side, like you are drawing a big grin in the air in front of you with your chin. Repeat five times. Believe it or not, the first set of exercises takes about 15 minutes. The second set takes less than half an hour. Obviously, if something HURTS, don't DO it. But work on being able to do these -- they should help the exercise issues. — Marilyn New Orleans, Louisiana, USA Undiagnosed IBS since 1976, SCD since 2001 Darn Good SCD Cook No Human Children Shadow & Sunny Longhair Dachshund Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2009 Report Share Posted May 18, 2009 Hi Marilyn, The Edema is so bad. I weighed 110 going into the hospital. I am now 125 and it is all in my legs. I cannot see my knees or my ankles. I am so worried about stretch marks too. I am disheartened by this and I was told the best way to take care of this is slow. A potassium friendly water pill and to start eating so my Albumin level raises. I am wobbling around like a penguin. I seem to always have to learn the hard way. My surgeon called me and said in the grand scale of things this is a " good " complication as so many bad things could of gone wrong. He's right. Jodi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2009 Report Share Posted May 18, 2009 Hi Jodi, so glad you're home safe and sound!! Accupuncture can get rid of the edema in one day. You'll be up a lot to the bathroom but it works like magic by stimulating the liver, spleen, and kidneys and unblocking the lymph system. Try it, you'll be dancing soon!!! God bless. Ann, Living in Italy Undiagnosed Crohn's since 1977 Diagnosed 15 years Sacroiliitis 25 years Rheumatoid arthritis 25 years Pyoderma Gangronosum 2 years SCD since July, 2008 Meds: None To: BTVC-SCD Sent: Tuesday, May 19, 2009 1:39:03 AMSubject: Re: edema Hi Marilyn,The Edema is so bad. I weighed 110 going into the hospital. I am now 125 and it is all in my legs. I cannot see my knees or my ankles. I am so worried about stretch marks too.I am disheartened by this and I was told the best way to take care of this is slow. A potassium friendly water pill and to start eating so my Albumin level raises.I am wobbling around like a penguin.I seem to always have to learn the hard way.My surgeon called me and said in the grand scale of things this is a "good" complication as so many bad things could of gone wrong. He's right.Jodi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2009 Report Share Posted May 18, 2009 The Edema is so bad. I weighed 110 going into the hospital. I am now 125 and it is all in my legs. I cannot see my knees or my ankles. I am so worried about stretch marks too. I understand this one. My weight bounces up and down by as much as 25-35 pounds. Try the lymphedema exercises I wrote about earlier -- getting it out of the legs when the lymph nodes in the abdomen aren't working well is what those are all about. Hopefully, yours will recover from the shock. They removed mine, so this is something I will probably always have to cope with. I am disheartened by this and I was told the best way to take care of this is slow. A potassium friendly water pill and to start eating so my Albumin level raises. Check, and check. I am wobbling around like a penguin. Yeah, that's one way to think of it. I seem to always have to learn the hard way. Not as hard as it could be! BTW, did you get something to help you get in and out of bed today? My surgeon called me and said in the grand scale of things this is a " good " complication as so many bad things could of gone wrong. He's right. Exactly. Any word on the pathology yet? I'm impressed that your surgeon called you! — Marilyn New Orleans, Louisiana, USA Undiagnosed IBS since 1976, SCD since 2001 Darn Good SCD Cook No Human Children Shadow & Sunny Longhair Dachshund Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2009 Report Share Posted May 19, 2009 Hi Marilyn, > >The Edema is so bad. I weighed 110 going into > >the hospital. I am now 125 and it is all in my > >legs. I cannot see my knees or my ankles. I am > >so worried about stretch marks too. > > I understand this one. My weight bounces up and > down by as much as 25-35 pounds. Try the > lymphedema exercises I wrote about earlier -- > getting it out of the legs when the lymph nodes > in the abdomen aren't working well is what those are all about. My brother reviewed the excersizes last night and he did a couple and today we will do a couple of rotations. > Hopefully, yours will recover from the shock. > They removed mine, so this is something I will > probably always have to cope with. OMG Marilyn this is terrible. I cannot imagine how you would feel needing to live with this. Yesterday this whole Edema thing got me so emotional I tried eating apple sauce and gagged and just cried for 30 minutes over the sink. I think this was brought on by a couple of things; 1- all of this became way too much to deal with, the Edema just pushed me over the edge. 2- I am so relieved my pain patch is working that I don't need so many extra narcotics which also has me loopy (this pain management really took a tole on me) 3- my GI yesterday hugged me and said " Jodi you are going through post traumatic stress having had debilitating Crohn's for so many years to now that being gone " I don't even know what this means Marilyn. He told me I can eat and not have to be scared of a bowel obstruction. Honestly, I don't know how to act having just been through a bowel obstruction. I was told to eat a banana and some eggs. The banana has a lot of potassium in it and a bite here and there can be a good thing. I have no idea what to do. What parameters do I follow? > >I am disheartened by this and I was told the > >best way to take care of this is slow. A > >potassium friendly water pill and to start eating so my Albumin level raises. > > Check, and check. Thnakfully, the pill seems to already be working I can somewhat see my knees now. What a gift to wake up to. My mom asked me yesterday if I would of known of of getting Edema would I still do the surgery. Heh, I said no I would not have gotten the surgery. Today that it looks like it is getting better I am feeling more comical about it. > >I am wobbling around like a penguin. > > Yeah, that's one way to think of it. My vagina is very bruised on the outside. My Gastro seems to think it is from the surgery. My surgeon thinks it is from beig very sensitive and bruising easily. My vagina was the first thing to swell post surgery so the surgeon thinks it is just very bad Edema. It's been wobbly to walk because of that. I didn't even pay attention it all turned purple and blue. Crazy colors down there- Sorry list. LOL. > >I seem to always have to learn the hard way. > > Not as hard as it could be! BTW, did you get > something to help you get in and out of bed today? OMG. I wish this was simple and is actually causing stress. I have a platform bed due to allergies (box springs are huge dust collectors) my platform bed has a " lip " so any type of railing I buy becomes problematic. There are ones that will fit under the mattress but it does not give me enough leverage to hoist myself (this getting in and out of bed/couch is probably the most painful thing and may explain why nights/early mornings are the hardest for me and I sleep very little as every time I need to pee I have to go through this) sleeping in the livingroom means I am woken up by noise all the time. My brother is tackling this issue head on today. My platform bed is breaking anyway so we don't mind altering it or buying plywood to elevate the mattresses. This just all means extra time and work. There are these special poles but I have to get approval to install something like that in my building. > >My surgeon called me and said in the grand scale > >of things this is a " good " complication as so > >many bad things could of gone wrong. He's right. > > Exactly. Any word on the pathology yet? I'm > impressed that your surgeon called you! You know- this question floored me. Being so emotional yesterday I didn't even ask. My goodness I cannot believe I forgot about this. I guess they will tell me when it is in? Still it is no excuse. Yeah, my docs are being so super nice. Being me makes me question if they are just this way or are they being this way with me? Surgeon told me I can call him on his private number. The truth is and not to be too dramatic I think they all feel really bad for me and are really relieved that a patient like me went through surgery. I am kind of an anomaly how I have been walking around. The surgeon said one stricture was so bad the passage was like unseen. This diet has absolutely saved my life. I am so thankful to be have such a wonderful medical team (GI and Surgeon) can't say the post op care was good but man did this surgery go well. I am blessed as they really did not know what to expect. As always thank you for your guidance. This turned out to be quite the heart pour. Jodi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2009 Report Share Posted May 19, 2009 At 04:02 AM 5/19/2009, you wrote: My brother reviewed the excersizes last night and he did a couple and today we will do a couple of rotations. Jodi, According to my therapist, the lymphedema exercises need to be done in sequence -- thighs to knees to ankles to feet to toes and back again -- to have the full effect on the lymph system. If five repetitions is too much for you at this point, do 3 -- or even one, but do it in sequence. >> OMG Marilyn this is terrible. I cannot imagine how you would feel needing to live with this. << I can't say it thrills me -- especially when I am struggling to lose weight, and having my " weight " bounce up and down and up and down. It's very discouraging, and, as you've discovered, having thighs, knees and ankles swollen up is NO fun. The exercises help, and so to the core-strengthening water therapy exercises I do three times a week -- although, of course, with new surgery, you can't go in the water! <g> >> Yesterday this whole Edema thing got me so emotional I tried eating apple sauce and gagged and just cried for 30 minutes << Oh, I understand that one. I see my oncologist on Thursday, for more labs, and I'm getting tense just thinking about it, even though I don't expect anything but a negative. >> 1- all of this became way too much to deal with, the Edema just pushed me over the edge. 2- I am so relieved my pain patch is working that I don't need so many extra narcotics which also has me loopy (this pain management really took a tole on me) 3- my GI yesterday hugged me and said " Jodi you are going through post traumatic stress having had debilitating Crohn's for so many years to now that being gone " I don't even know what this means Marilyn. He told me I can eat and not have to be scared of a bowel obstruction. Honestly, I don't know how to act having just been through a bowel obstruction. I was told to eat a banana and some eggs. The banana has a lot of potassium in it and a bite here and there can be a good thing. I have no idea what to do. What parameters do I follow? << I'm glad the pain patch works well. If you're being told to eat a banana and some eggs, then by golly, make banana pancakes, and enjoy! If, that is, you think you can tolerate it. When I came home from my surgery, my oncologist said I could eat whatever my nomral food before the surgery had been. I elected to stay with cooked vegetables, cooked fruit, eggs, and basic meats, with a breakfast treat of an apple-pecan muffin. In other words, I didn't stay with clear liquids, or thick liquids, or even entirely soft foods -- well, the veggies and fruits were pretty soft, but I had the meat normal. I ate small amounts about every two hours. That let me take small amounts and not overtax my system at any one time, but still get adequate calories for healing. >> Thankfully, the pill seems to already be working I can somewhat see my knees now. What a gift to wake up to. My mom asked me yesterday if I would of known of of getting Edema would I still do the surgery. Heh, I said no I would not have gotten the surgery. Today that it looks like it is getting better I am feeling more comical about it. << Truthfully, I don't think you had any more choice about your surgery than I did about mine. We both had to have it -- and as terrified as we each were of our respective procedures, we know we needed it. >> My vagina is very bruised on the outside. My Gastro seems to think it is from the surgery. My surgeon thinks it is from beig very sensitive and bruising easily. My vagina was the first thing to swell post surgery so the surgeon thinks it is just very bad Edema. It's been wobbly to walk because of that. I didn't even pay attention it all turned purple and blue. Crazy colors down there- Sorry list. LOL. << Yes, I understand that one, too. I have a picture which shows what I looked like, with four tubes sticking out of the pubic mound, which picture I will NOT post on a public list. I was really, really, REALLY sore. >> OMG. I wish this [getting out of bed] was simple and is actually causing stress. I have a platform bed due to allergies (box springs are huge dust collectors) my platform bed has a " lip " so any type of railing I buy becomes problematic. There are ones that will fit under the mattress but it does not give me enough leverage to hoist myself (this getting in and out of bed/couch is probably the most painful thing and may explain why nights/early mornings are the hardest for me and I sleep very little as every time I need to pee I have to go through this) sleeping in the livingroom means I am woken up by noise all the time. My brother is tackling this issue head on today. My platform bed is breaking anyway so we don't mind altering it or buying plywood to elevate the mattresses. This just all means extra time and work. There are these special poles but I have to get approval to install something like that in my building.<< That is why I recommended the superpoles -- they are tension rods, and don't require drilling holes in the walls and the ceiling. They go in fast -- about ten minutes for installation. <g> If you had ordered them on Sunday, you'd probably have them by now! Dynamic living is located in Connecticut! http://www.dynamic-living.com/searchSite/superpole/ >> You know- this question [about the pathology] floored me. Being so emotional yesterday I didn't even ask. My goodness I cannot believe I forgot about this. I guess they will tell me when it is in? Still it is no excuse. << Well, when you have too many things on the table at once, it's not hard to forget one or two. Although I admit, with my own labs coming up on Thursday, my mind is on pathology just now. >> The truth is and not to be too dramatic I think they all feel really bad for me and are really relieved that a patient like me went through surgery. I am kind of an anomaly how I have been walking around. The surgeon said one stricture was so bad the passage was like unseen. This diet has absolutely saved my life. << Exactly -- and SCD ought to let you heal so that you will never go there again. — Marilyn New Orleans, Louisiana, USA Undiagnosed IBS since 1976, SCD since 2001 Darn Good SCD Cook No Human Children Shadow & Sunny Longhair Dachshund Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2009 Report Share Posted May 21, 2009 Marilyn, > According to my therapist, the lymphedema > exercises need to be done in sequence -- thighs > to knees to ankles to feet to toes and back again > -- to have the full effect on the lymph system. > If five repetitions is too much for you at this > point, do 3 -- or even one, but do it in sequence. Very helpful. The Edema has gotten much better, I am lucky it was quick. My doc also gave me a potassium friendly diuretic and he said because I am so tiny (short) he has no doubt I would pee. So between that, these excersizes and finally doing some acupuncture the Edema is much much better. My right foot is a mess and a Croc barely fit on it but my goodness I have knees and calves again!!!! The acupuncture really helped the pain too. After my treatment it was the first time since surgery where I felt my breathing was good (I have been using that plastic thing they gave me at the hospital- I reckon with your treky sleep device you didn't need this? Or what did hey have you do to strengthen your lungs?) The acupuncture gave me such a sense of relief. Was lovely. I am doing it again today. > OMG Marilyn this is terrible. I cannot imagine > how you would feel needing to live with this. << > > I can't say it thrills me -- especially when I am > struggling to lose weight, and having my " weight " > bounce up and down and up and down. It's very > discouraging, and, as you've discovered, having > thighs, knees and ankles swollen up is NO fun. It is absolutely awful. I was terrified when I looked at myself. I cannot imagine how you feel or what it does to your self esteem. > The exercises help, and so to the > core-strengthening water therapy exercises I do > three times a week -- although, of course, with > new surgery, you can't go in the water! I miss baths. It is just such a staple for me to do epsom salt baths and take care of my anal issues that way. I can totally deal just complaining now. Trust me in the marco it is such a non issue. > >> Yesterday this whole Edema thing got me so > emotional I tried eating apple sauce and gagged > and just cried for 30 minutes << > > Oh, I understand that one. I see my oncologist on > Thursday, for more labs, and I'm getting tense > just thinking about it, even though I don't expect anything but a negative. My thoughts will be present with you today. So much stress to deal with going through this process and then the bureaucracy.. My goodness. My husband is not allowing me to open the mail. How much longer do you have to go through these cancer screenings? Is it always through the same doctor? > If, that is, you think you can tolerate it. When > I came home from my surgery, my oncologist said I > could eat whatever my nomral food before the > surgery had been. I elected to stay with cooked > vegetables, cooked fruit, eggs, and basic meats, > with a breakfast treat of an apple-pecan muffin. > In other words, I didn't stay with clear liquids, > or thick liquids, or even entirely soft foods -- > well, the veggies and fruits were pretty soft, > but I had the meat normal. I ate small amounts > about every two hours. That let me take small > amounts and not overtax my system at any one > time, but still get adequate calories for healing. My eating is much better and that should reflect because I am doing better. Not eating adequately is a problem. My GI explained to me that is part of the reason I blew up is my Albumin was just dangerously low. I have been eating different purees of meat, fish.. and yesterday I ate scrambled eggs (I have never eaten eggs so soon after a bowel obstruction it's a total shift in psychology for me) but I have been juicing too. I have been using these combos my integrative doc gave me of different diuretics. Watermelon/parsley is absolutely lovely and since C is a problem with so many narcotics I am not worried about it loosening my stool one bit. > >> Thankfully, the pill seems to already be > working I can somewhat see my knees now. What a > gift to wake up to. My mom asked me yesterday if > I would of known of of getting Edema would I > still do the surgery. Heh, I said no I would not > have gotten the surgery. Today that it looks like > it is getting better I am feeling more comical about it. << > > Truthfully, I don't think you had any more choice > about your surgery than I did about mine. We both > had to have it -- and as terrified as we each > were of our respective procedures, we know we needed it. You are right. I still feel " guilty " that I didn't do enough though. Mu gastro thinks I am experiencing post traumatic stress having dealt with Crohn's like this for so long.. than having such a wacky colonoscopy result.. the small bowel series and the alleged mass (is it dysplasia?) to having a bowel obstruction to going into surgery (which went beautifully well) to having 3 ultimate major screw ups with pain management (which was my worst nightmare really one of the reasons I didn't want to do this to begin with) I was actually told to make official complaints. Maybe when I am feeling better together with getting a copy of my medical file at the hospital I will sit down and write about what happened to me. I would like to give it to all my physicians, send it to the hospital and maybe a newspaper. How in America one can have perfect surgery (I am lucky I have really good health insurance too) but post op pain management was a complete and utter disaster. I am not saying this is news to anyone. My doc is so sad about the state of our health care system. It is hard to understand how a nurse does not speak English. > That is why I recommended the superpoles -- they > are tension rods, and don't require drilling > holes in the walls and the ceiling. They go in > fast -- about ten minutes for installation. > If you had ordered them on Sunday, you'd probably > have them by now! Dynamic living is located in > Connecticut! http://www.dynamic-living.com/searchSite/superpole/ I should of listened to you. I didn't have much time and I didn't take it too seriously. Sending my brother the link of the pole. This getting in and out of bed business is a huge problem. I am getting my hoist thing for the couch today. The couch is better for me but I think one of the reasons the pain is worse at night and in the morning is getting up and doing that repetitive painful motion. My brother who is so sweet knows all of these modalities about body work has been working with me how to use my personal movements to the best of my range of motion. Anyway, I think I will be much happier once I address this. Yes, you told me so.. I should of so listened. > >> The truth is and not to be too dramatic I > think they all feel really bad for me and are > really relieved that a patient like me went > through surgery. I am kind of an anomaly how I > have been walking around. The surgeon said one > stricture was so bad the passage was like unseen. > This diet has absolutely saved my life. << > > Exactly -- and SCD ought to let you heal so that you will never go there again. AMEN! Everyone is telling me to eat all of these things and it is just crazy to me. I mean why am I HERE to begin with. Obviously emotions/stress/bacteria etc etc play a huge part but come on' diet is like essential. I was told to drink coconut water today. What do you think about this? It is supposed to be nourishing and I shouldn't have a problem now (things don't bother me like they did which is a nice perk) Jodi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2009 Report Share Posted May 21, 2009 Marilyn, > According to my therapist, the lymphedema > exercises need to be done in sequence -- thighs > to knees to ankles to feet to toes and back again > -- to have the full effect on the lymph system. > If five repetitions is too much for you at this > point, do 3 -- or even one, but do it in sequence. Very helpful. The Edema has gotten much better, I am lucky it was quick. My doc also gave me a potassium friendly diuretic and he said because I am so tiny (short) he has no doubt I would pee. So between that, these excersizes and finally doing some acupuncture the Edema is much much better. My right foot is a mess and a Croc barely fit on it but my goodness I have knees and calves again!!!! The acupuncture really helped the pain too. After my treatment it was the first time since surgery where I felt my breathing was good (I have been using that plastic thing they gave me at the hospital- I reckon with your treky sleep device you didn't need this? Or what did hey have you do to strengthen your lungs?) The acupuncture gave me such a sense of relief. Was lovely. I am doing it again today. > OMG Marilyn this is terrible. I cannot imagine > how you would feel needing to live with this. << > > I can't say it thrills me -- especially when I am > struggling to lose weight, and having my " weight " > bounce up and down and up and down. It's very > discouraging, and, as you've discovered, having > thighs, knees and ankles swollen up is NO fun. It is absolutely awful. I was terrified when I looked at myself. I cannot imagine how you feel or what it does to your self esteem. > The exercises help, and so to the > core-strengthening water therapy exercises I do > three times a week -- although, of course, with > new surgery, you can't go in the water! I miss baths. It is just such a staple for me to do epsom salt baths and take care of my anal issues that way. I can totally deal just complaining now. Trust me in the marco it is such a non issue. > >> Yesterday this whole Edema thing got me so > emotional I tried eating apple sauce and gagged > and just cried for 30 minutes << > > Oh, I understand that one. I see my oncologist on > Thursday, for more labs, and I'm getting tense > just thinking about it, even though I don't expect anything but a negative. My thoughts will be present with you today. So much stress to deal with going through this process and then the bureaucracy.. My goodness. My husband is not allowing me to open the mail. How much longer do you have to go through these cancer screenings? Is it always through the same doctor? > If, that is, you think you can tolerate it. When > I came home from my surgery, my oncologist said I > could eat whatever my nomral food before the > surgery had been. I elected to stay with cooked > vegetables, cooked fruit, eggs, and basic meats, > with a breakfast treat of an apple-pecan muffin. > In other words, I didn't stay with clear liquids, > or thick liquids, or even entirely soft foods -- > well, the veggies and fruits were pretty soft, > but I had the meat normal. I ate small amounts > about every two hours. That let me take small > amounts and not overtax my system at any one > time, but still get adequate calories for healing. My eating is much better and that should reflect because I am doing better. Not eating adequately is a problem. My GI explained to me that is part of the reason I blew up is my Albumin was just dangerously low. I have been eating different purees of meat, fish.. and yesterday I ate scrambled eggs (I have never eaten eggs so soon after a bowel obstruction it's a total shift in psychology for me) but I have been juicing too. I have been using these combos my integrative doc gave me of different diuretics. Watermelon/parsley is absolutely lovely and since C is a problem with so many narcotics I am not worried about it loosening my stool one bit. > >> Thankfully, the pill seems to already be > working I can somewhat see my knees now. What a > gift to wake up to. My mom asked me yesterday if > I would of known of of getting Edema would I > still do the surgery. Heh, I said no I would not > have gotten the surgery. Today that it looks like > it is getting better I am feeling more comical about it. << > > Truthfully, I don't think you had any more choice > about your surgery than I did about mine. We both > had to have it -- and as terrified as we each > were of our respective procedures, we know we needed it. You are right. I still feel " guilty " that I didn't do enough though. Mu gastro thinks I am experiencing post traumatic stress having dealt with Crohn's like this for so long.. than having such a wacky colonoscopy result.. the small bowel series and the alleged mass (is it dysplasia?) to having a bowel obstruction to going into surgery (which went beautifully well) to having 3 ultimate major screw ups with pain management (which was my worst nightmare really one of the reasons I didn't want to do this to begin with) I was actually told to make official complaints. Maybe when I am feeling better together with getting a copy of my medical file at the hospital I will sit down and write about what happened to me. I would like to give it to all my physicians, send it to the hospital and maybe a newspaper. How in America one can have perfect surgery (I am lucky I have really good health insurance too) but post op pain management was a complete and utter disaster. I am not saying this is news to anyone. My doc is so sad about the state of our health care system. It is hard to understand how a nurse does not speak English. > That is why I recommended the superpoles -- they > are tension rods, and don't require drilling > holes in the walls and the ceiling. They go in > fast -- about ten minutes for installation. > If you had ordered them on Sunday, you'd probably > have them by now! Dynamic living is located in > Connecticut! http://www.dynamic-living.com/searchSite/superpole/ I should of listened to you. I didn't have much time and I didn't take it too seriously. Sending my brother the link of the pole. This getting in and out of bed business is a huge problem. I am getting my hoist thing for the couch today. The couch is better for me but I think one of the reasons the pain is worse at night and in the morning is getting up and doing that repetitive painful motion. My brother who is so sweet knows all of these modalities about body work has been working with me how to use my personal movements to the best of my range of motion. Anyway, I think I will be much happier once I address this. Yes, you told me so.. I should of so listened. > >> The truth is and not to be too dramatic I > think they all feel really bad for me and are > really relieved that a patient like me went > through surgery. I am kind of an anomaly how I > have been walking around. The surgeon said one > stricture was so bad the passage was like unseen. > This diet has absolutely saved my life. << > > Exactly -- and SCD ought to let you heal so that you will never go there again. AMEN! Everyone is telling me to eat all of these things and it is just crazy to me. I mean why am I HERE to begin with. Obviously emotions/stress/bacteria etc etc play a huge part but come on' diet is like essential. I was told to drink coconut water today. What do you think about this? It is supposed to be nourishing and I shouldn't have a problem now (things don't bother me like they did which is a nice perk) Jodi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2009 Report Share Posted May 21, 2009 Marilyn, > According to my therapist, the lymphedema > exercises need to be done in sequence -- thighs > to knees to ankles to feet to toes and back again > -- to have the full effect on the lymph system. > If five repetitions is too much for you at this > point, do 3 -- or even one, but do it in sequence. Very helpful. The Edema has gotten much better, I am lucky it was quick. My doc also gave me a potassium friendly diuretic and he said because I am so tiny (short) he has no doubt I would pee. So between that, these excersizes and finally doing some acupuncture the Edema is much much better. My right foot is a mess and a Croc barely fit on it but my goodness I have knees and calves again!!!! The acupuncture really helped the pain too. After my treatment it was the first time since surgery where I felt my breathing was good (I have been using that plastic thing they gave me at the hospital- I reckon with your treky sleep device you didn't need this? Or what did hey have you do to strengthen your lungs?) The acupuncture gave me such a sense of relief. Was lovely. I am doing it again today. > OMG Marilyn this is terrible. I cannot imagine > how you would feel needing to live with this. << > > I can't say it thrills me -- especially when I am > struggling to lose weight, and having my " weight " > bounce up and down and up and down. It's very > discouraging, and, as you've discovered, having > thighs, knees and ankles swollen up is NO fun. It is absolutely awful. I was terrified when I looked at myself. I cannot imagine how you feel or what it does to your self esteem. > The exercises help, and so to the > core-strengthening water therapy exercises I do > three times a week -- although, of course, with > new surgery, you can't go in the water! I miss baths. It is just such a staple for me to do epsom salt baths and take care of my anal issues that way. I can totally deal just complaining now. Trust me in the marco it is such a non issue. > >> Yesterday this whole Edema thing got me so > emotional I tried eating apple sauce and gagged > and just cried for 30 minutes << > > Oh, I understand that one. I see my oncologist on > Thursday, for more labs, and I'm getting tense > just thinking about it, even though I don't expect anything but a negative. My thoughts will be present with you today. So much stress to deal with going through this process and then the bureaucracy.. My goodness. My husband is not allowing me to open the mail. How much longer do you have to go through these cancer screenings? Is it always through the same doctor? > If, that is, you think you can tolerate it. When > I came home from my surgery, my oncologist said I > could eat whatever my nomral food before the > surgery had been. I elected to stay with cooked > vegetables, cooked fruit, eggs, and basic meats, > with a breakfast treat of an apple-pecan muffin. > In other words, I didn't stay with clear liquids, > or thick liquids, or even entirely soft foods -- > well, the veggies and fruits were pretty soft, > but I had the meat normal. I ate small amounts > about every two hours. That let me take small > amounts and not overtax my system at any one > time, but still get adequate calories for healing. My eating is much better and that should reflect because I am doing better. Not eating adequately is a problem. My GI explained to me that is part of the reason I blew up is my Albumin was just dangerously low. I have been eating different purees of meat, fish.. and yesterday I ate scrambled eggs (I have never eaten eggs so soon after a bowel obstruction it's a total shift in psychology for me) but I have been juicing too. I have been using these combos my integrative doc gave me of different diuretics. Watermelon/parsley is absolutely lovely and since C is a problem with so many narcotics I am not worried about it loosening my stool one bit. > >> Thankfully, the pill seems to already be > working I can somewhat see my knees now. What a > gift to wake up to. My mom asked me yesterday if > I would of known of of getting Edema would I > still do the surgery. Heh, I said no I would not > have gotten the surgery. Today that it looks like > it is getting better I am feeling more comical about it. << > > Truthfully, I don't think you had any more choice > about your surgery than I did about mine. We both > had to have it -- and as terrified as we each > were of our respective procedures, we know we needed it. You are right. I still feel " guilty " that I didn't do enough though. Mu gastro thinks I am experiencing post traumatic stress having dealt with Crohn's like this for so long.. than having such a wacky colonoscopy result.. the small bowel series and the alleged mass (is it dysplasia?) to having a bowel obstruction to going into surgery (which went beautifully well) to having 3 ultimate major screw ups with pain management (which was my worst nightmare really one of the reasons I didn't want to do this to begin with) I was actually told to make official complaints. Maybe when I am feeling better together with getting a copy of my medical file at the hospital I will sit down and write about what happened to me. I would like to give it to all my physicians, send it to the hospital and maybe a newspaper. How in America one can have perfect surgery (I am lucky I have really good health insurance too) but post op pain management was a complete and utter disaster. I am not saying this is news to anyone. My doc is so sad about the state of our health care system. It is hard to understand how a nurse does not speak English. > That is why I recommended the superpoles -- they > are tension rods, and don't require drilling > holes in the walls and the ceiling. They go in > fast -- about ten minutes for installation. > If you had ordered them on Sunday, you'd probably > have them by now! Dynamic living is located in > Connecticut! http://www.dynamic-living.com/searchSite/superpole/ I should of listened to you. I didn't have much time and I didn't take it too seriously. Sending my brother the link of the pole. This getting in and out of bed business is a huge problem. I am getting my hoist thing for the couch today. The couch is better for me but I think one of the reasons the pain is worse at night and in the morning is getting up and doing that repetitive painful motion. My brother who is so sweet knows all of these modalities about body work has been working with me how to use my personal movements to the best of my range of motion. Anyway, I think I will be much happier once I address this. Yes, you told me so.. I should of so listened. > >> The truth is and not to be too dramatic I > think they all feel really bad for me and are > really relieved that a patient like me went > through surgery. I am kind of an anomaly how I > have been walking around. The surgeon said one > stricture was so bad the passage was like unseen. > This diet has absolutely saved my life. << > > Exactly -- and SCD ought to let you heal so that you will never go there again. AMEN! Everyone is telling me to eat all of these things and it is just crazy to me. I mean why am I HERE to begin with. Obviously emotions/stress/bacteria etc etc play a huge part but come on' diet is like essential. I was told to drink coconut water today. What do you think about this? It is supposed to be nourishing and I shouldn't have a problem now (things don't bother me like they did which is a nice perk) Jodi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2009 Report Share Posted May 24, 2009 At 12:34 PM 5/18/2009, you wrote: I have post surgery Edema I gained 15 pounds in water weight in my legs. I can't see my knees or my ankles. They blew up like a balloon looking like they need to pop. I'm still dealing with it -- mainly because they removed some of the lymph nodes for biopsy, and that screws up the circulation. If you can, try lying flat (well, with a pillow under your head) on the bed, on your back. Breath gently but deeply a half dozen counts. Now slide your right foot towards you so your knee is bent at about 90 degrees. Slide your foot away so your leg returned to the flat position. Repeat with left foot. Repeat above 5 times, if you can. Tighten and flatten your knees -- kind of like you were standing with your knees locked five times. Rotate your feet around your ankles five time, clockwise, then counter clockwise. Squeeze your toes together, kind of like you were trying to pick something up with your foot, five times. Stretch your toes as far apart from each other as you can, five times. Repeat ankle rotation. Repeat knee flattening. Repeat knee lifts. Now tighten the vagina -- similar to Kegel exercises, if you know of those, five times. Stroke very gently across your abdomen and stomach, then up your sides to the armpits. This helps get the fluids from the lower legs circulating. The lymph nodes in your abdomen may be on strike because of the surgery, so you push the fluids to where the nodes under your arms can circulate them. You may find you have to pee within a few minutes of doing this. These were given to me by a lymphedema specialist. Other useful exercises (which I was given my the physical therapist... I was doing these the week after my surgery): Hold your arms out in front. Slowly drop them to your sides, then raise them again. Repeat five times. Hold your arms in front. Pull your right arm back towards you. Re-extend it while pulling your left arms back towards to. Repeat five times. Sitting in a chair, push your heels up so your feet are in a position as if you were wearing super-spike heals. Lower your heels to the floor. Repeat five times. Reverse, and try to point your toes to the ceiling while keeping your heels on the ground. Repeat five times. Standing, palms against your sides, bend sideways a little -- if it hurts, don't do it very far. Reverse and do the other side. Repeat five times. Sitting in the chair, kick your right leg out in front of you so it is level. Do the left leg. Repeat both five times. Sitting in the chair, shrug first one shoulder forward, then the other, as if you were trying to point to something with your shoulder. Repeat five times. Sitting in the chair, with a sturdy ottoman in front of you, place one foot on the ottoman. Swing your leg to the side in an arc, using the ottoman to support your leg. Repeat five times. Do the other leg. Swing your arms across in front of each other, controlled. Cross your arms, then separate them out to the sides, then cross them in front. Repeat five times. Still sitting in the chair with your foot on the ottoman, slide your foot towards you (similar to the exercise in the first section). Slide it out again so your leg is flat. Repeat with other leg. Repeat five times. Roll your head from side to side, like you are drawing a big grin in the air in front of you with your chin. Repeat five times. Believe it or not, the first set of exercises takes about 15 minutes. The second set takes less than half an hour. Obviously, if something HURTS, don't DO it. But work on being able to do these -- they should help the exercise issues. — Marilyn New Orleans, Louisiana, USA Undiagnosed IBS since 1976, SCD since 2001 Darn Good SCD Cook No Human Children Shadow & Sunny Longhair Dachshund Quote Link to comment Share on other sites More sharing options...
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