It's me Darlene, AKA Nutz. I had my j pouch surgery last week on Monday, Oct 5. I have been wanting to post a comment but have been in lots of pain and my laptop was acting up. So, I will start by saying that all went well with surgery- thank God. No complications and they were able to connect my pouch just fine- thank goodness.
I ended up getting an epidural because the doctor wasn't sure if he would be able to do the procedure with the laproscope or if he would have to open me up. I guess they prefer for you to get the epidural when you have to be opened up completely so that you have better pain control after surgery. Let me tell you that the epidural works wonders. Great pain control b/c it is continuous. However, I was shaking so bad in recovery and not sure if it was from all the meds but they did give me something to calm it down- Benadryl I think. The surgery took 6 hours in total and by the time I got to the hospital floor I was in pain from moving around from stretcher to bed. They gave me IV Dilaudid for breakthru pain which you feel the effects immediately- it's like a fuzzy head rush feeling. I felt like a druggie and I've never done a single drug before. I guess that's what the "euphoric" feeling feels like. Anyway, my epidural had Dilaudid and Bupivicaine in it. narcotic plus anesthetic. One of those two things made me itch like crazy- i mean really bad- that I had marks on my arms and legs. They gave me Benadryl but didn't do much. Then the pain service people prescribed something called Nubane (spelling?) and I didnt' know it at the time but it made me feel completely out of it- I was staring in space and I felt like someone was pressing down on my shoulders- worst feeling ever. We figured that feeling was the Nubane after the third dose.
Let me backtrack a bit. So, the first night, I got to my room at 10pm. We family left soon after they knew all was well and the nurse aide was taking my vitals every 15 minutes because of being post op and on the epidural. Unfortunately, my blood pressure kept going lower and lower. I normally ;run low, 100/60 but it got down to 86/54 so the nurse decided to turn the epidural off at 3am. I started feeling SEVERE pain at 4:30 am and they finally got it going again at 5am cuz my pressure went back up. They gave me a bolus (extra push of IV pain medicine) cuz I was without any type of relief for so long immediately after surgery. Then at 8am, my blood pressure bottomed out again, I think 88/56 and they turned the epidural off again! This time I was in tears around 10am and they didn't get it going until 10:30. The pain service people came back and were so mad at the nurses for turning it off completely. They ended up lowering my epidural rate to help keep my blood pressure under control. Being without anything for pain for that long was just unreasonable. Needless to say, day 2 (Tuesday, Oct 6) was a catch up day for me. I didn't feel like walkig or eating. I did sit in the chair though. I got lots of pain meds thru the IV and rested. Wednesday (Day 3) was a better day. I walked the halls 4 times and even ate a little! Thursday morning (Day 4) was the day they took my epidural out and foley catheter so that I could pee on my own. As soon as they took the epidural out, I got an IV push of Dilaudid. The pain got pretty bad that day, they call it a setback day when the epidural comes out. I was so used to continuous pain relief and being able to press a button to get a "boost" but it was all gone. I took a sleeping pill that night and it helped a little. Friday was a better day. Walked a little, ate a little, was emptying my bag and such. I was trying to get off of the IV meds and onto the orals to go home. I took mostly oral meds on Saturday- which sucked- compared to IV. I was in lots of pain Sat night and even Sunday morning but still got discharged to go home yesterday, Sunday Oct 11. They upped my Vicodin to the extra strength cuz the pain is still so bad. I felt like I was watching the clock every 6 hours to take another 2 pills. I just tried the ES an hour ago so we will see how it does for me. I am happy to be home but wishing the pain will get better. FYI: I don't have a high pain tolerance to begin with so maybe that is why I am having a hard time. All in all, everything is ok. I am still very happy I had the surgery- just anxious to feel better. My doctors did not push me into having surgery- they had said I could probably wait 5 years and wanted me to try more of the cimzia, humira stuff. I had already failed remicade and was mentally prepared for surgery. Well, it turns out my surgeon told my husband that my colon was more diseased than he thought. It didn't even look as though I was taking any steroids or any meds for that matter. Guess what else? The pathology report called it severe colitis so now they know that all of my complaining was real! I don't know, sometimes I feel like the docs think you're exaggerating if the scope doesn't show them what they think to be more severe.
Ok, enough venting. about my bag- not gonna lie, hate having an ileostomy. It looks disgusting, smells disgusting and the output is disgusting but it is temporary. And you know what else is weird? I am an RN by trade and I can barely bring myself to look at it even though I used to take care of cancer patients that had ileo/colostomy bags. It's just so different when it's on you. My home health care nurse is coming by tomorrow to change it. I hope I can be more accepting of it cuz I it's going to be around for 6-8 weeks if all goes well. I know I shouldn't complain cuz it's a cure for my colitis but kinda having a hard time with the self image thing. I know I need to get over it.
Anyway, I know this was long but just wanted to let you guys know my experience since everyone has been so supportive. I will continue to leave updates but please, please ask whatever questions you may have regarding surgery or recovery. I would be more than happy to help.
Btw, I think the extra strength vicodin is helping!
Diagnosed with Ulcerative Proctitis 1999, changed to Ulcerative Colitis 2002. Currently taking 6MP 50mg, Prednisone 30mg, Lialda 2 tabs/day, Colocort enemas, Canasa suppositories