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Having the worst day since the hospital

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  • aprilchen
    replied
    Originally posted by Moonheart
    My pain doubled since my hydro and I haven't had any relief since. I had to increase my morphine to 120mg a day with doctor's approval, and there are times when I just scream the pain shocks me so bad. Plus now I have increased edema and pain as well as heat in my legs, arms/hands, and face. I'm pretty bummed about it.

    I hope you feel better.

    Moonheart
    Moonheart, the funny thing is...(not funny at all) is that my IC was so much better even though we didn't know I had it before the cysto/hydro. I, too, have had a lot of retention everywhere, including my bladder. My husband and I self-cath and do instillations about every other day to help with pain.

    My pain medication has been increased also from Lortab 10's to Percocet 7.5, two times a day and Methadone 10mg 2x daily. I also take Phenergan and Valium quite a bit because when I am in pain, I get anxious and can't relax and also get nauseated, so they added those. Today has been harder than the last few...I think since last Saturday.

    What stinks even more is that I have to get it under control by Sunday. I have to work on Monday (part-time substitute teacher). Anyway, please keep that in your prayers. I do not want to have to call in again and will go no matter what, really. I would just like to have a decent day.

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  • smcclafferty
    replied
    [QUOTE=Moonheart]My pain doubled since my hydro and I haven't had any relief since. I had to increase my morphine to 120mg a day with doctor's approval, and there are times when I just scream the pain shocks me so bad. Plus now I have increased edema and pain as well as heat in my legs, arms/hands, and face. I'm pretty bummed about it.

    I hope you feel better.

    Moonheart[/QUOTE

    I have that symtom too, burning/tingling/prickling in my arms,legs,feet, face, trunk, everywhere. I just got it after my cysto/hydro in January, but of course the doc said that didn't cause it. I am going to several docs trying to find out what the heck this parasthesia is..

    Leave a comment:


  • aprilchen
    replied
    Thanks for the kind words, April. I am DEFINITELY sticking up for the instillations today. With my husband last night, I was reading the stuff on Interstim and read a really long post on here by someone who said read before you consider Interstim. I can't remember where, but I ran across it on here. I think God wanted me to see it because I was thinking more and more about it. But, however, the more conservative treatment of instills with heparin and lidocaine work for me for at least a week at a time...so I think it is best to stand up and stick up to get them at home so maybe I can work again. My plan is if today they won't approve me to get them at home, tomorrow I have an appt. with my PCM and I am asking for a referral to an IC specialist in New Orleans. Perhaps "this" doctor will allow it. I see no reason why, if I am already allowed to catheterize myself, I can't do instills at home. It makes no sense. The hardest part about that is self-catheterization. I can draw up the medication, no problem...especially if I can successfully deflate and remove a foley cath (did that last week because the thing was bleeding around it and later found out that the nurse who placed it inflated the balloon too much and man, was my bladder irritated after that)!

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  • aprilmae
    replied
    April,

    Remember it is always okay to get multiple opinions on anything and more importantly you are the patient and have to right to stick up for what you think will help you and if that is doing the instillations at home then so be it!

    I am so sorry to hear you are feeling bad. Hang in there.

    April

    Leave a comment:


  • aprilchen
    replied
    Thanks for the group hug. Well, that's just it Kara..my doctors do not agree on how to treat pyridium. The ER doc I saw and often see said she NEVER does long term Urogesic Blue or Pyridium. As for my primary care, she agrees with the ER doctor. But here's what really gets me. My Urologists are in a group of two.....sometimes you see one and sometimes you see the other: one of them PUT me on Pyridium Plus long term and the other one said NO to that long term. Then, they don't agree either on one letting me come home and do instillations of heparin and lidocaine (which really works) and the other one only wants me allowed to do it in the office. With this latter issue, me smells a doctor who wants to make money on me every week because I am getting instillations about once a week.

    Hmmmm....

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  • Kara29
    replied
    Your Doctor?

    What did your Doctor say about taking the Pyridium Long Term?

    Leave a comment:


  • Bessie
    replied

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  • aprilchen
    replied
    Thank you guys for all the replies. Today is somewhat better. Will write more when I feel better. Thanks again.

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  • tigger_gal
    replied
    so sorry you are still feeling bad. I am one who hydros kill me. I found that taking urised is very helpful with a pain pill, and trying to sleep it off.

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  • leelee88
    replied
    April, I am so sorry you are still having such a rough time..I am still hurting from my hydro and that was back in Nov...It was really bad at first, then got better now im back to hurting...Funny because I was not having any pain before the surgery.. I think it messed me up.. But I already told you that..I just hope you can get some relief...Its got to get better....
    (((((hugs)))))))))))

    Ronda

    Leave a comment:


  • Moonheart
    replied
    Originally posted by N'importe Qui
    Oh, April, did anyone suggest baking soda to you? Disolve about a half teaspoon in a glass of water and drink it. It may also be helpful if you sit in a warm tub or sitz bath with baking soda and water.

    Also, I haven't tried this, but there's been some enthusiasm lately on the boards for MSM gel for burning. It's by Jacob's Labs, you can order online and it isn't that expensive. I'm sure you're ready to try just about anything at this point!

    I know drinking baking soda sounds weird, but it can be really helpful. Tastes awful, but that's nothing compared to the pain you're living with.

    I hope you find something out of that list that will help, and I also think you should call your doctor to ask about the pyridium. Surely you don't have to stay off it forever.

    Feel better, sweetie.
    April, if the pyridium helps then by all means take it. I know alot of people who take it long term. It is the coloring that is a problem usually but I think it takes awhile for that to be a problem. Read all the posts about it on here and research it as much as you can. I had some around here but it's lost in the mess that used to be my house.

    I got some compression stockings to help my edema and it's down to about a two from a five or worse. So that is helping to keep the fluid up by my kidneys where it can be evicted. I sleep better lately but not great and for a long time, months, I wasn't sleeping at all. It's enough to make you crazy.

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  • Berkshire Road
    replied
    Oh, April, did anyone suggest baking soda to you? Disolve about a half teaspoon in a glass of water and drink it. It may also be helpful if you sit in a warm tub or sitz bath with baking soda and water.

    Also, I haven't tried this, but there's been some enthusiasm lately on the boards for MSM gel for burning. It's by Jacob's Labs, you can order online and it isn't that expensive. I'm sure you're ready to try just about anything at this point!

    I know drinking baking soda sounds weird, but it can be really helpful. Tastes awful, but that's nothing compared to the pain you're living with.

    I hope you find something out of that list that will help, and I also think you should call your doctor to ask about the pyridium. Surely you don't have to stay off it forever.

    Feel better, sweetie.

    Leave a comment:


  • Berkshire Road
    replied
    OMG April, why didn't you call? I'm so sorry things just seem to keep getting worse for you. I don't have a magic bullet; how I wish I did! But have you tried ice between the legs? A lot of people get relief from that.

    You have my phone number. You know you can call any time, day or night.

    I have a feeling you're hitting bottom about now, and things will start to get better soon. It will take time, but I really think that's going to start happening. I hope this is not just wishful thinking on my part! But I get these "feelings" from time to time and they are usually right.

    Love to Aaron, and every prayer I can muster is heading out your way.

    Leave a comment:


  • aprilchen
    replied
    Hey Moonheart,

    Thanks for your thoughts above. It means so much to know that this isn't just ANY board...it's a board filled with people who care and most don't mind sharing if it helps us feel that we are not alone, I noticed.

    Since we're more than a month since my surgery that this is IC and probably not caused by the surgery. However, I am not dumb and I was not having nearly this much pain until he did the hydro. So, whatever.

    Hope you're sleeping well. I have been up almost all night.

    April

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  • Moonheart
    replied
    Hi April,

    I don't remember the date of mine, but I think it was around the same time as yours. I'd have to look at my posts to find out for sure.

    I don't know how many people have this reaction, but you will see in my posts I thought I'd hit the mother lode after mine. The first two days were heaven. Then hell came back with a vengeance. I hope it goes away soon.

    Hope you feel better soon. Write anytime you need to talk.

    Hugs,
    Moonheart

    Leave a comment:

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