Post op pain

Cysax.....well i don't have a neo but i do have an Indiana Pouch. I can relate to your pain on moving the bowels....i really haven't talked about this because i know not everyone experiences the same things and i didn't want to scare anyone...but i actually would sit in the bathroom and cry whenever i had to "go"..It was very painful but the pain would subside almost immediately after. I also found certain foods would and still do cause loose movements with me and i was pretty quickly able to recognise what they were...and i know that is a variable also. But by the third month my intestines had healed but it did seem to be a very long haul to get there.
I am really wondering why they are not giving you the benefit of the doubt here and at least re-examining you.......possible hernia?... Sorry i'd love to be more help...i do think they need to physically examine you not just talk on the phone with you. Pat

Well, it's a cute combination, then!

The issue is mostly when you move your bowels, or is it more than that? Are you constipated?

These are really personal questions, I know, but they would help us in figuring out how to help :-\

Stephany in Iowa

I have been in touch with Dr. Stein and his group. The consensus is people heals differently and that pain is to be expected. No one seems to think it has any other origin. I’m just freaking out because even though they say that, it seems my level of pain surprises them. As for treatment, it’s Tylenol and Vicoden. I have tried Tramidol and it made me sick. I will look into the other drug

As I said it’s mostly my “gut” and it’s general function. Pain really kicks in when I have a bowel movement.

Thank you for your input – this is the first time engaging in a discussion and it’s a big relief to have some dialog. Any further insights are greatly appreciated.

No sadly I don’t play sax – cysax is a combination of our kids names – Cyrus and Saxon

Cysax, one of the main issues right now should be to get rid of your pain. You cannot heal while you are fighting that. And it shouldn't have to be constipating, either. Most modern treatment says that if the patient says they are in pain, they need to be treated.

One of my husband's doctors said that if his pain persisted, he may need to be treated for nerve pain, with Neurotin (gabapentin), which is cheap and effective. There is also tramadol (which, I understand, is low dose morphine-like with a tylenol component). His pain went away, but I filed that info in my brain.

There are lots of pain meds that your medical team could explore. Please call and insist that you be seen and be treated until you are pain-free. Do not think that you should "gut this out". You must contact your doctor, and at least tell his nurse to call you back and tell you how they are going to address your pain.

By the way, are you a sax player?

Stephany in Iowa

Dr. John Stein performed my RC as well, and I can tell you that--in my case--the pain was manageable when I got home, and three-and-a-half months after surgery I had no pain at all. Well, maybe a twinge every now and then, but nothing that required even an aspirin.

What you are experiencing does not sound normal. Have you contacted Dr. Stein's office directly with your concerns or are you dealing with another doctor?

Zach

I am 48 and had a radical cystectomy three and a half months ago. Prior to surgery (after being misdiagnosed and in great pain for five years, none of the five urologists I visited ever recommended a cystoscopy)) I had a six week course of BCG and was clear for 1 1/2years. I found BCG caused a lot of persistent painful side effects; aching teeth and jaw, back ache, ringing in my ears. After reoccurrence I opted for surgery. I was very fit going in and thought my recovery was going to be comparatively rapid. I had a nerve sparing procedure by Dr. John Stein at USC Norris which I consider to be the best of the best.

My surgery was successful with no invasive disease detected. Post surgery I had two separate infections on my incision. Both were cut open and need to be packed with gauze to allow draining till healed. The lower one, right above the base of my penis is just now closing after more than two months – it was a big deep cut at least 3”L X 3”D. My wife had to pack this open wound 4x a day – it was hardcore. I am very lucky in the continence department – I am 98% continent day and night. I have to get up 2x during the night, during the day I can go 3-5 hrs without having to urinate. I am working on erections and am at about 45% erect on a good day – I figure in time that will come, no pun intended. All in all I consider myself extremely lucky.

My big problem has been pain. The hospital was a pain nightmare, out of control. Removal of the Penrose and catheter – nightmare pain (and no one at the hospital told me what to expect going in so it was a huge shock). The general attitude from the hospital as well as the doctors has been surprise that I’m in pain. It’s almost as if they think this procedure shouldn’t really be painful. As an example, after I had my wound cut open (in the examnation room with a little local anesthesia) the doctor told me to go home and take extra strength Tylenol – this was an opening big enough to put most of your hand into, and it was painful before I went in. These guys are world class, but they are a tough crew. I have had huge problems getting pain medication.

Home recovery has been better, but I am still constantly in pain. The only time I’m not in pain is when I wake up and take my one and only dose of Vicoden 3 X 500(mg?) pills and feel O.K. for around two hours. Then the pain sets in again. I generally don’t take more because I find it causes major constipation. I have a lot of pain in my gut, around my belly button, sides and the incision. I get intense cramping and diarrhea. Sometimes I feel like my insides have torn open and are leaking out. From time to time I get super intense pain where my prostate used to be and in my groin around my lymph nodes. I’m back at work since December 17th but am taking it super easy. I’m getting stronger, slowly – but the pain is staying with me. My major pain is my “gut” and the feeling my intestines are screwed up, which I’m sure they are. I have a very good diet, try not to eat too much at one time but keep on going through spasm and diarrhea episodes with an occasional constipation thrown in. Walking, although essential and great for my general feeling of well being seems to make things worse.

I would be most thankful for anyone else’s experience. Am I super sensitive to pain or is this to be expected? What’s the timeline, when does it ease off if ever.

Thanks/Happy New Year