Guest guest Posted November 1, 2005 Report Share Posted November 1, 2005 I am glad to hear that your pain has decreased and your appetit has increased. That is a very very good sign. Be patient sweeety slowly but surely things will get better. Whipple's are one of those surgeries that can take 6 months or more to really recover from. And yes you are right about the methadone. It is one of the most difficult drugs to quit taking. Especailly cold turkey, which is how it sounded like they want you to do origianlly. The withdrawells can make you physically ill for up to 6 weeks with flue like sypmtoms, back pains, nausea, and mood swings. It has always struck me odd that they would choose such an addictive drug to detox somebody from heroin. They said the herion withdrawels can be deadly so it is considered the lesser of 2 evils. Are you still taking it? Marinol is an excellent idea although it can be difficult to get. I was given it in the hospital and it worked wonderfully but was told I could not have a prescription for it as it is monitored closely and used primarily for cancer/chemo patients. Personally just between you and me and the lamp post, the natural form is far more effective and eases with drawel symptoms significantly. Now I am not promoting smoking pot, but in some states medicinal marijuana can be prescribed, in 11 states I do believe. I have never ever experiences withdrawel from marinol or its natural form. A lot of people, myslef included, have had succes using ginger as an anitemetic. You can keep the fres rood in the freezer then slice out a small sliver and place it btween you cheek and gum. It may be a but burny but it does work. Also in health foods stores they have ginger type losengens that work too. Leave something to be desired in taste. I like to just drink ginger ale too, sounds silly but it does help, just dont use a straw. Toomuch air being swallowed can increase any gas pressure you may be having. I'm am so sorry tht I could not keep up with the emails to you but am glad that I was able to help you a little bit. I have taken a turn for the worse of late and find it difficult to do much at all. This past week with getting my children all geared up for Holloween pretty much ahs done me in. We had a blast, but I am pretty much at rock botton at this point. I saw the surgeon last week and he said I needed another big operation. I was absolutely devastaed. Tomorrow I will have a barium swallow then will need to see him in clinic afterwards. I am not happy about this at all. I have been sobbing all night, all week really. Gawd I have been such a sap. I am so afraid that he will have nothing but bad news for me tomorrow and I know if he does I will just break down completely. He will probably be looking to throw me into one of those rubber rooms for a little R & R. well I am getting really tired and have to get up sooooo early. Just know that I have been thinking about you and hope yoiu feel better soon. You had gotten some really good advice from the other board members so no doubt if you try somme of those you will be feeling better in no time Well off to bed for me but do keep in touch. Warmly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2005 Report Share Posted November 2, 2005 Hey girl! I am so happy to hear from you. I am thinking about you all the time. Also, I've talked about you and your experiences, advice and work as a nurse in length to my mom. We can't get over how great you've been to me. Truly, how I couldn't have survived this past year without finding this group. I know I've said how great you guys have all been to me this year, beginning with a personal phone call from Anyse, who doesn't know me from a hole in the head. Who took time during pain and suffering to tell me about the Whipple and what to expect. I have " friends " who I've known for at least 4 years since I moved to Atlanta who wouldn't even pick up the phone to ask how I am. You guys are my rock and I know if I ever need help that someone will hear my call. I can't thank each and everyone of you enough. I will try not to be so sappy. , I know you are wounded and hurting. I wish there was something I could say or do to ease the pain and anxiety you are feeling right now. Just know that we are all here for you. We care about how you are feeling and are all praying that your bump in the road will soon be a distant memory. Just think of how many times you've boosted one of our spirits, we wouldn't let you down. You are loved and supported and you'll get through this, eventhough right now you feel like you won't. We know what it is like to be so sick and have to wash it down with a nice cup of barium (and just when you think you are done, at the end of the cup, they hand you another, fresh cold one)! I really wish that someone could talk to my dad about pot. I am living with my parents, so there isn't a whole lot of room for me to talk about it being my responsibility and my problem if I got caught. It is so ridiculous that there are things that can help people, ease suffering and that we have people making decisions that prevent us from getting what we need to feel better. My dad would throw me on the street if he found out what I was doing. There has been a whole lot of dialogue about this very issue lately and I can't seem to make them understand how desperate I really am. My local surgeon happens to be my cousin (he's just following me after my Whipple, his partners do surgical procedures on me, if I need them, one of which literally saved my life when I was put into ICU after the GI docs trying to place a PEG tube in) anyhow, he really hates me being on Roxicet and everything else I've taken (how evil dilaudid and demerol are). We talked to him last night about Marinol. At my pain clinic appt. yesterday the doctor prescribed Anzement. My insurance only allows me to get 7 pills at a time, which is a 3 day supply. I think one pill costs 14 dollars! Anyhow, we are going to try that for a week and if it doesn't work, we are going to try Marinol. We contacted an oncologist and talked to him about the different treatments and meds for nausea. At first, I was feeling a lot better (my 2nd pill) from taking the Anzemet, but now I am having that lovely nauseated feeling come back. I hate nausea. I even called the surgeon who did the Whipple to talk about the nausea and his response was " Well I did major surgery in hopes that it would cure this and all your other problems, I am disappointed, as I am sure you are that it didn't. " I can't tell you how many times I've heard major pancreatologist tell me that they were disappointed about the results of their work on me. I can't stand it. I guess I am being a pig, because the pain is so much better and I am still bitching and moaning about the nausea. I've spent the last 6 years of my life being nauseous every day. It gets a little old. And waking up each day for the last year (come Dec. 1) and being sick wears on the spirit. I know many of you know exactly what I am screaming, I just want this to disappear. I want my life back. I know some of you are so much worse of and I could be so much worse off, why can't I be happy about being nauseous- it would make everything so much easier. Luckily, I am off of the Methadone, I have been for about 5 weeks on Thursday. There was a lot of discussion about whether or not I should start taking 5 mg. after I had alreay been off of it (cold turkey) for 2 and 1/2 weeks. The pain and surgical team in Boston didn't even take into consideration giving me the Methadone to help wean me. I just didn't want to start taking it again, after I had been off of it for so long. I was already more than (what I was told) half way through the withdrawal period. Now I am just praying that it is out of my system and I am over that. I was hoping that the nausea was because of the Meth withdrawal but that doesn't seem likely now. I have tried ginger, but not from the root. My local natural food store doesn't have the losengens, only a natural gingera ale, which I can't have because of the carbination, no no after the Whipple and a ginger root extract that you put in water. But that contains alcohol and I am not willing to go there. Speaking of alcohol. When I met with my surgeon after I was discharged I was asking him what things I needed to avoid. In particular, I wanted to know if I would be able to eat Sushi again. I mentioned that I know alcohol is a no no. He said I could drink. He just said that I needed to do things in moderation. I was floored by this. Don't worry, I haven't started drinking and I probably won't for a very, very long time, if ever. When you are up to it, I want to hear what they want to do to help you. I missed all the previous information about what exactly is going on with you. Who are your surgeons going to be? Please write only if you feel like it. I miss you. Again, thanks for everything, C. Love, Quote Link to comment Share on other sites More sharing options...
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