Nothing has changed...HELP PLEASE!!!

[topcop229]

If you have read some of my other posts, you know I've been flaring for just about a month now. And I am starting to wonder...is this a flare or is this what my new IC life is going to be like? I spent four days in the hospital last week and had a hydro, I guess it didn't do much because I am in as much or sometimes more pain than I was before. But, I will say that the only time I have had any relief and gotten any rest were those days in the hospital. I don't know what to do. I try to be positive, but it gets more and more difficult. I am hurting so badly and the pain meds aren't touching it. Not supposed to see the doc until next week. There have been a couple of times that I have felt so bad I want to get in the car, ambulance, whatever and head right back to the hospital. Every day my outlook gets worse and worse and I get more and more afraid that this pain is never going away. I can't live like this. The pain sucks so bad.

***Side note for anyone living near Greensboro, NC. When I was in the hospital, I stayed at Wesley Long, and they allow your pets (as long as they are leashed and have their shots) to come and visit you. I can't tell you how nice it was it see my doggie while in the hospital. And their policy is quite liberal, because I have a 200 pound dog, and they didn't bat an eye.

[ICLori]

A lot of times people do have increased pain for up to one month after a hydro. I think your pain will subside soon (I hope.) You might want to try the ER for pain relief in the meantime - sounds like your pain meds aren't cutting it.

Also, I always find really good pain relief from a plain old hot water bottle filled with very hot water. (A hot water bottle is sometimes called an enema kit, it's found usually in the lower areas of the drugstores down with the other cheaper stuff.)

Blessings, hope you feel better soon,
Lori

[tbokay]

Sorry you are in so much pain. If it isn't getting any better, please don't continue to suffer at home ~ go to ER (however you can get there!) and get some pain relief.
:grouphug: :kiss:

[ChrissySunshine]

:grouphug: BIG HUGS to you Claudia, I hope you get some relief soon! ~ Chris :pray:

[topcop229]

Hi. If anyone has been looking for me, I have been in the hospital since
Wednesday night and have no idea when I am leaving. Just found out today that they have wireless internet here, so hopefully I will be able to keep you posted on my situation. Things have been up and down big time. They are having to cath me often because i physically cannot go...and even sometimes when they cath me they still get nothing because the muscles are squeezing the cath shut!!! I also now have an unexplained rash...what in the world???

Hope everyone is feeling pretty good. Thank you for all your prayers while I am in the hospital.

claudia

[Kara29]

Claudia,

I was just reading your post and I have to say it touched my heart to know that this hospital allows pets. There have been so many time where I needed to see my kitties faces when I was was real sick and in real poor health. This is so neat and my Husband was like awwwwwwwwwwww that is so cool!

***Side note for anyone living near Greensboro, NC. When I was in the hospital, I stayed at Wesley Long, and they allow your pets (as long as they are leashed and have their shots) to come and visit you. I can't tell you how nice it was it see my doggie while in the hospital. And their policy is quite liberal, because I have a 200 pound dog, and they didn't bat an eye.

I hope they get to the root of the cathing issues and find a way for you to move on and live.:angel:

Hugs to you. I've use wireless internet at the hospital and it's great!

Kara :smile tee

[Briza]

Claudia
That is so great they let you see your dog :) I'm real sorry about the pain you're in, I also had severe retention and that led to paralyzed bowels after my hydro and I was in hospital for a week. I know the pain you must be feeling. :grouphug: The morphine didn't even touch it for me.
I'm guessing from your post the nurses are cathing you with the in and out method? Why aren't you on a foley catheter? The nurses were never able to empty my bladder completely with the in and out method and boy did I drive them crazy screaming for them to come cath me every hour. I had to have a pediatric size cath ordered...I absolutely could not tolerate the adult size I was so swollen from the retention. When the pediatric cath and foley were finally in place I was drained of TWO LITERS!! Also I'm sensitive to latex so had to have non latex cath. I wonder if that could have anything to do with your rash????
Have they x-rayed your abdomen to see how your bowels and intestines are doing? My stay was a comedy of errors, it was 5 days before they x-rayed me and found my bowels were paralyzed (called an ileus). I sure hope you've had this done. I didn't even know to ask, couldn't ask I was in such pain, don't know why it wasn't done sooner, I hadn't had a bm since before my hydro. :( And apparently all the morphine just slows things down, too.
I am sorry you are in this situation. Please keep us updated on your situation and please please please if you have not had a bm insist on x-rays of your abdomen. All the time I was there I was given enemas and laxatives to no avail and finally had to have my stomach pumped thru my nose. :help: Please understand I'm not trying to scare you, just I had such a bad experience and didn't know at all what was going on or what to ask for. :grouphug:

[Kara29]

During my own cathing experiences with myself I noticed that even a little lubrications seems to clog up the holes with the in out method. The less lubrication I could get away with using, the better off I was. The nurses put HUGE amounts of lube oon thos catheters and the little eyelets or holes provided for you to get urine out, just simply can't even get to the urine because there is so much lube in there so the have to keep trying which in turn causes you more pain. I agree, I think a foley catheter would have been best in this situation but most doctors don't listen to us even if we are for sure 100% correct on the issue. They look at us like we are crazy and then proceed to do whatever they want anyway. It so maddening!

Kara

[Sarojini]

I hope you are feeling better; I am so sorry to hear that you've been hospitalized and are so sick. I am quite happy to hear that your pets are allowed to visit you!! :) That can help a lot :)

Sending lots of healing hugs :grouphug:

[jbakerbell]

My last horrid flare lasted almost 18 months. THEN, my cat's vet prescribed GLUCOSAMINE for her because of her recurring cystitis. He told me that cats also get I-C and GLUCOSAMINE is used to treat it quite effectively. I started taking 1500 mg twice a day and within a week my pain from the flare was manageable with just pyridium plus. My urologist poohpoos the "treatment" but if you look on the internet, you will see that there are those who believe it to be a viable treatment for I-C. I continue to take Glucosamine (generic from Sam's Club) and have had only minor, short lived flares for a year now. I actually have some pain free days. As a benefit, it helps your joints too.
It doesn't cost much to try it. go for it.

[Briza]

Wondering how Clauida is doing and if she's still in the hospital?

[Imustpee]

I use KY Ultra Gel..it's like a slightly-thick liquid and I only put a little strip on the back 2 inches of the cath, starting at the tip, not where the hole is, that way it won't clog up the hole..haven't had any problems doing it this way...I hope you are feeling better today...and I wish I could have had my 2 pups visit me!! I missed them so much....more than the kid even...hhahahaa

[topcop229]

Hi to all. Sorry I haven't been on the board, but after my last message, I could barely read or type due to meds, so I couldn't get on here. Let me update everyone. I got out of the hospital Thursday afternoon and have been sleeping A LOT ever since...catching up on all the sleep I missed while in the hospital. I did have an MRI of my back and a colonoscopy while in the hospital,and both were ok. Well, the results were ok, but neither were fun. :-)

I am still having to self cath, my doc said that under no circumstances should I "push" to get my urine out naturally. I must say, I feel pretty degraded and humiliated having to cath myself or having my husband cath me. It just sucks!!!

I had a VERY traumatizing incident while in the hospital that I am still healing from, both physically and emotionally. I was doing instillations while in the hospital, and so one night, I cathed and then the nurse put the instill in and clamped the cath. After 30 minutes, I unclamped and began to take the cath out, and it would not come out. This had happened a few days before, where my pelvic muscles were just SO tight that the cath wouldn't come out, and when the nurse got it out, I bled for 10-20 minutes. So I figured it was that again. I got my husband to pull on it and he felt the same resistance, so we called the nurse. He came in and I told him the story of this happening before. He pulled and finally said, well, we gotta get it out of you. I bit the bullet and he pulled it out and guess what appeared...the foley balloon!!! They had been cathing me with foley caths for whatever reason, and so when he put the instill in, it didn't go in my bladder, it filled up the balloon instead (for those that don't know, whenever you have a foley, they fill up that balloon with 10cc of fluid to keep it inside you). So, my 17 cc of instill were in there, and this thing the size of an egg was passed through my urethra. The night before, a nurse went through the exact same process and nothing happened, so none of us even thought about the fact that we used a foley and the balloon would fill. Anyway, OMG it was horrible, and it honestly was/ is emotionally traumatic almost as much as physically. The nurse felt terrible, immediately called the on call doc and gave me meds to knock me out.
Other than that (which is enough), my hospital stay was uneventful. My plan is bladder therapy 3x a week, urodynamics testing (can anyone tell me what that is?), rest, no work for AT LEAST 9-12 months ( I am getting my home business ready to get going once I feel better, as unfortunately we cannot afford to have no income, and I am sure after my FMLA time runs out at work, they'll probably fire me). Other than that, just prayers.

Thanks to all of you that have been giving me support, calling and PMing me and posting messages. This has been the worst time of my life and your support has helped so very much.

Claudia

[topcop229]

Oh, sorry, one last thing...I have been using Astroglide on my caths (as recommended by my physical therapist) and it is much better because it is VERY thin and does not clog the cath at all. It's a little pricey, but worth it. Local drug store should have it. I got mine at CVS.

[TabbiH]

I have been taking the glucosamine for a while too. I take one in the morning and one at night. It never helped my wrist, but isn't hurting anything else. My father (a pharmaceutical chemist) thinks it's good because it can help keep your joints younger as you age. And who am I to argue?

QUOTE=jbakerbell]My last horrid flare lasted almost 18 months. THEN, my cat's vet prescribed GLUCOSAMINE for her because of her recurring cystitis. He told me that cats also get I-C and GLUCOSAMINE is used to treat it quite effectively. I started taking 1500 mg twice a day and within a week my pain from the flare was manageable with just pyridium plus. My urologist poohpoos the "treatment" but if you look on the internet, you will see that there are those who believe it to be a viable treatment for I-C. I continue to take Glucosamine (generic from Sam's Club) and have had only minor, short lived flares for a year now. I actually have some pain free days. As a benefit, it helps your joints too.
It doesn't cost much to try it. go for it.[/QUOTE]