Having the worst day since the hospital

[aprilchen]

Hi,

I feel like I have been using this board MUCH more for reading and searching for help, than helping anyone else. Anyway, I have been living on this board since I found out about it.

Today has been the worst and most painful day that I have had since the day of my hydrodistention. I *think* the reason for that was that I stopped my pyridium yesterday because I read that it was bad to take that and Urogesic for longer than a week consecutively.

So, I have felt every bit of IC pain that probably could be felt today. I have an in and out cath here and my husband has catheterized me at least four times. Two other times I was able to urinate by sitting in a hot, hot tub of water.

Anyway, I take the meds listed below and have taken 10mg Methadone and 12.5mg Phenergan. I don't know what else to take because I am scared that overtaking the Pyridium and Urogesic will cause all the side effects like liver and kidney failure.

Please help. Does anyone else have any immediate solutions...(though I don't know if immediate exists for IC). All that has helped is when my bladder has been emptied completely and have gotten SOME relief. Does anyone have any thoughts? If it wasn't for my wonderful husband and how he motivates me, I really don't think I would have made it through the three years I have had to live in pain before a diagnosis.

April

[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

[topcop229]

April,
I'm sorry you are feeling so terrible! Of course I am not a doctor, but I have been taking pyridium plus for months on end...my doc never mentioned anything about liver danger. I'm pretty sure I would be ten times worse off without it.
As for advice, I wish I had more. I would continue with the warm baths as tolerated, and maybe use a heating pad on your abdomen or back if either is hurting or you have pain radiating. Also, if you are having a lot of burning and urethral pain, sometimes an ice pack in between your legs offers some relief.
If you are still feeling this bad in the morning, don't hesitate to put a call in to your doc's office. You should not have to suffer like this! Maybe there is a different med he could give you to help ease your pain.

[ICNDonna]

Hydrodistentions have helped me more than any of my other treatments, but some people find it takes a while to recover. Have you been checked to be sure you don't have an infection? Even if you were checked only a few days ago, you really should think about it again, especially since you've been cathing.

After my first hydro, I had a problem with retention that lasted almost two weeks. I hope you feel better very soon.

Sending gentle hugs,
Donna

[aprilchen]

Donna, I have a test kit here and checked my urine for infection and it showed the same thing it showed in the ER the other night: 3+ blood, 3+ protein and 4+ bilirubin. Anyway, so they said that can be from IC and there is not infection. Thanks for suggesting that.

Claudia,
I have been doing all those things. My heating pad is my best friend, besides my husband. My pain is calming some now but today has been awful and I just pray for sleep. Last night I slept all of probably two hours. Anyway, I am taking the max I can on meds...10mg twice a day on Methadone, at least until I see pain mgmt this Wednesday. My last epidural is going into my left and right pelvic/hip bones so maybe that will at least deaden the back pain and maybe affect the nerves of the bladder. Hey Moonheart, I hope everything is ok with you. May I ask, how long ago was your hydrodistention?
Should I expect the hard times to last a LONG time post hydrodistention?

Mine was Jan. 18 and it stinks right now, but today has been the worst since stopping Pyridium.

Thanks for everyone's responses.
April

[Moonheart]

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

[aprilchen]

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

[Berkshire Road]

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.

[Berkshire Road]

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.

[Moonheart]

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.

[leelee88]

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

[tigger_gal]

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.

[aprilchen]

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

[Bessie]

:grouphug:

[Kara29]

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

[aprilchen]

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....

[aprilmae]

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

[aprilchen]

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)!

[smcclafferty]

[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..

[aprilchen]

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.