I had a similar reaction to Percocet but I dont think it was as bad as yours is. They gave me a topical called Sarna lotion that helped some.

Omg kelsey i have the exact same problem right now. I had an eua surgery today and they gave me several dilaudid shots in my iv, along with benadyl as i was having massive dilaudid itch and rashes. I have now been on percos and benadryls since i got home and i still cant stop itching. I seem to be scratching my skin right off. Usually benadyls stop the itch caused by percocets for me...but they arent working now. I dont know either how to make this itching stop. And i even had aveeno lotion at home and it hasnt helped either. I have to keep taking the percos cause i am in horrid pain from the surgery today.

Maybe a different antihistamine? Atarax perhaps (hydroxyzine)? or maybe phenergan. Whatever you take, be sure you take it a good 30-60 minutes before the opiate, so it is on board and in full force. Topical antihistamine creams may work for you too.

These side effects are usually dose dependent, so if you can get by with a lower dose, your itch will decrease too.

Or you may have just become too sensitive too opiates. How about Ultram (tramadol) for pain? I actually got better post op pain relief with Toradol (ketorolac) than the opiates the last time I had surgery. You can only use it for a few days because it is a powerful NSAID, but IT WORKS!

Jan

jan are any of those other antihist. over the counter? or the topical ones? Of course, I cannot get a hold of any doctor today. I can't even get my PCP or her nurse to call me back.

And toradol... thats a good idea. It always works very well for me when I had it in the hospital. Tramadol doesn't do anything for me with this kind of pain.. but that toradol stuff. That's what I need. If I could get ahold of a doctor maybe they would give me that for a day or so.. as percocet is not helping me.. itching or not. And I really do not want to go to my local er.

Atarax and phenergan are prescription, but you can try the other OTC antihistamines, like Zyrtec, Claritin, Allegra, that are OTC. You may need a higher than OTC dose though (you'd need to look up what the dose range was).

You can buy Benadryl topical cream OTC. Of course, there always is Calamine, but that is mostly if you have a rash that needs calming, not an itch that is caused systemically. You can try topical anesthetics, but not sure if they would work (like Solarcaine).

I was amazed that an NSAID actually worked better than morphine when I was in the hospital. They gave me the Toradol IV in the hospital, and enough for 4-5 days at home orally. It trumped Percocet!

Jan

I feel your pain. I've had similar experience with Tylenol 3, to the point that my GP has it noted down in my adverse reaction list. My scalp in particular was very itchy and in my sleep I had scratched until I bleed. Nothing really worked to relieve the itching except warm baths. But I felt the itching inside and out, so it was only minimal relief.

You can try wearing gloves or socks on your hands when you sleep to stop you from scratching. I have trouble growing my nails too, so I always hate cutting them for any reason.

Well ended up at the local ER last night for the massive rash/itching and horrendous pain which percocet wasn't helping. My surgeon's office (yes cleveland clinic) wouldn't do anything. A lower level nurse called midday to tell me to try motrin... idiots.. if percocet isn't working then what would motrin do.. besides I'm not supposed to take that stuff. And then she told me I was probably allergic to percocet because I was itching so I should stop taking it. Duh.. its a common reaction so common that even in post-op the day before CC nurses were giving me benedrayl. Idiots. They didn't offer any other solution for my pain. And then I asked them exactly what was injected into my wound during t the EUA but they wouldn't tell me. And it is not on my discharge papers. All it says is "injected a material into the wound." I have been wondering if this itching/rash which benedrayl won't touch has something to do with what was injected. They then suggested I come today and meet with my surgeon's main nurse. That is a six hour roundtrip drive in the snow to meet with someone who doesn't even have the courtesy to return a call to a suffering post-op patient. And they had absolutely no understanding of why I said I couldn't sit in a car that long as I am in extreme pain and I cannot sit.

So back to the same old lack of care after a surgery as usual at Cleveland Clinic. As my husband said.. I should know better by know - CC doesn't give a darn about helping somebody once they kick you out of there after a surgery.

And worst part.. I looked at my backside. and it honestly looks like I have been beat with a baseball bat and kicked with steel toe shoes.. and is so so swollen. No wonder I am in unbelievable pain.

Anwyays - the local ER said there was nothing else they could do other than benedrayl for itching. Which of course they insisted on giving me in IV even though it wasn't working. Then my hubby called our pharmacist. And she told him atarax. Same as what you said Jan. So with two votes for atarax - we asked for that. They didn't seem to know what it was. They obviously looked it up, gave me that, and it WORKS! They also gave me a few dilaudid shots, and then a toradol (only after I asked for it) shot in the IV, and sent me home with a script for dilaudid pills and atarax pills. They were very angry at me because I wouldn't allow anyone from their colorectal dept to come into the room. As it was their colorectal surgeons who built my jpouch wrong in the first place. So needless to say it was quite a difficult evening sitting there with the ER doc and nurses being mean and not knowing what to do until we kept telling them what to do, then they'd go look it up, then they would do it. ridiculous.

I am so pissed off that I have to go through all of this BS to get help. Its bad enough that I am so sick and so much in pain.. but to have to go through all this junk and end up at an incompetent ER. I am holding back on sending a flaming email to CC, but my husband thinks my surgeon should know how yet again CC has abandoned me after a surgery.

Gee, that sounds perfectly awful! At least you arrived with some new suggestions, but you would not think you would have to arrive with your own playbook! I can understand their frustration when you arrive in the ER, but refuse their recommended consult. A difficult approach from any angle! But really, why couldn't a general surgeon consult suffice, since this was a non-healing wound issue, NOT a colorectal issue?

I guess the real question is whether or not you are willing to continue treatment at CC, as the aftercare is definitely lacking. I can understand a reluctance to diagnose and treat over the phone, but they must also understand the challenges of being a long distance patient. You'd think that they would have a local practitioner to recommend to be a liasion with "eyes on" to report back to them, rather than just leaving you in the lurch. I agree with your husband that CC needs to know about your struggles, but I also agree with you about holding off until you are not in "off with their heads" mode. You may sound more convincing if you are calm and rational.

This is simply terrible, and I have no idea how you solve the problem. My only suggestion would be to look into local wound healing centers/specialists. Obviously, this is not a j-pouch or ileostomy issue.

Here is an example:
http://ohiovalleyhospital.org/...s/wound-care-center/

Jan

thx. Jan and thanks again for the atarax suggestion.

also you can't actually see my wound on the outside. It's at the end of a long sinus tract. Not like I was going to let any ER doctor look up into that!

Problem is.. I can't give up my surgeon. No matter what. I am potentially facing a hysterectomy... another long story.. but I would need him in on it. I have to have his technical skill set and expertise.

As my hubby says, my surgeon has no clue how bad the care is and the bs his team gives patients once they are out of there.

I agree with your husband. The guys at the top have no idea what is going on in the trenches unless somebody gives them a clue. One of the problems with big institutions, it is easy to fall through the cracks. Those folks assigned with fielding phone calls are pretty much limited by the marching orders they are given. They often do not have access (or time) to research the medical record. So, again, it falls to the attending physician to leave clear notes for everyone, the patient, the staff, etc. And of course, there are guidelines the staff are given that say when certain symptoms are described the two choices are go to the ER, or make an urgent care appointment.

So, you don't have to give up your surgeon to see about local treatment. But, granted, sinus tracts are real bugaboos. If all you had was drainage, that would be one thing, but this is causing you pain, so that is different. Still, I would talk to Dr. Remzi and/or Shen and see if these procedures could be done locally with their input. This is no way to live. Hopefully, this last thing actually does what it is supposed to do and maybe that is all you need to worry about. I'd hate to think you went through all this suffering for no reason...

Jan

Well a few months ago my local gi discussed taking over the wound care. I brought it up with shen and remzi. And he discussed it with them directly at the big conference in december. I was all for it until we found out he wanted me in there once a week under twilight sedation and he would be doing it but with a surgeon present. Turns out the "surgeon present" would have been the guy who built my original jpouch wrong or a non-colorectal guy who didnt really do surgeries but was more of an administrator. So hubby and i decided that the risk for something happening was too high to not have a competent surgeon present.

Also found out after tuesdays eua that remzi is bringing in a plastic surgeon for a look at the next eua in six weeks. So seems like the dreaded and much feared muscle flap repair might be around the corner. I cant seem to find much info on it let alone anyone that has gone through it.

Too bad they did not take pictures and just have the plastics guy look at that, and maybe save some time, since this would just be looky-loo.

I am flabbergasted that your choices were either the surgeon you never want to see again or someone who doesn't actually do surgery!? You'd think you were in the middle of nowhere. The twilight sedation thing doesn't sound wrong. But, if this is turning into a plastic surgery thing, then I guess you are sort of stuck.

Maybe you need to move to Cleveland! (just kidding...) Seriously, I think if the communications were better, you probably would be a happier camper. Nothing like being left in the dark to feel small and insignificant (especially when you are the latest guinea pig for the next journal submission).

Jan