1 week post j pouch surgery

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Nutz
Regular Member


Date Joined Jul 2009
Total Posts : 149
   Posted 10/12/2009 4:44 PM (GMT -6)   
Hi everyone,
 
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!
 
Take care, 
 
Darlene
Nutz
Diagnosed with Ulcerative Proctitis 1999, changed to Ulcerative Colitis 2002.  Currently taking 6MP 50mg, Prednisone 30mg, Lialda 2 tabs/day, Colocort enemas, Canasa suppositories


Collicat
Veteran Member


Date Joined May 2009
Total Posts : 827
   Posted 10/12/2009 9:17 PM (GMT -6)   
Hi Darlene,

I am so happy to hear that the surgery is over and that the worst is behind you. Please remember that you are only a week post surgery...the pain will get better! As for changing the bag and dealing with the ostomy....that also will improve. My son, Dillon hated it when he first had to deal with it in the hospital but is now an old pro at it. Truthfully, he still really dislikes it but he is learning to accept it. As much as you dislike it, when the homecare nurse comes try to do the change mostly on your own with her supervising. The more you deal with it the easier it will become.

How is the eating going? Even now that you are home it is still just as important to "walk, walk, walk and chew, chew, chew"..lol...I think I should patent that saying!

Try not to get too frustrated and take one day at a time. We were told not to look for improvement from one day to the next, but from one week to the next. I think that is really important.

Wishing you all the best,
Cathy (mom of Dillon - 5 weeks post 1st surgery) tongue

BetterHalf
Regular Member


Date Joined Oct 2009
Total Posts : 39
   Posted 10/12/2009 11:15 PM (GMT -6)   
Darlene - I appreciate you sharing your post-operative experiences here! It gives others a better idea of what to expect with the j pouch surgery. Thank you!

It sounds like you are steadily recovering. I hope that all goes well for you!

Also, thanks for your comment on my "upcoming surgery" post about my husband's surgery that will happen on Thursday. You gave some good advice there! I think that I'm going to print off that whole thread.

Wishing you all the best!
Glenda

Nutz
Regular Member


Date Joined Jul 2009
Total Posts : 149
   Posted 10/13/2009 2:31 PM (GMT -6)   
Hi Collicat! I thought that was you that told me to walk and chew- lol! Best advice to date:) I can't believe what a difference this extra strength Vicodin is making. I am no longer watching the clock like a hawk. Don't get me wrong, the pain is still there but it is a bit more bearable. I had such a nice visit with my sister today and she also noticed my improvement. I read your post (on BetterHalfs thread) about Dillon going out and laughing with his friends and it brought tears to my eyes! You sound like such a wonderful mother! I am a mother of 2 little girls (ages 4 and 2) and nothing makes me happier than seeing them happy. Now I need to get myself feeling better to share in that happiness! My home care nurse came by today to change my bag. I did help her take it off cuz she wanted me to but it grossed me out. It kept "emptying" and it made me nauseous. I know it will get easier but just hard for now. Thanks for all the advice and kind words.

BetterHalf- thank you as well! I will be thinking about you and your husband on Thursday morning and will say a prayer and light a candle for us. I think prayer is the best medicine! Don't worry if the surgery takes longer than expected. My surgeon said 4-6 hours and up to 2 hours in recovery. It did indeed take the whole 6 hours plus 2 whole hours in recovery. I am sure my husband was nervous but all was well in the end. Best of luck and keep us updated!
Darlene "Nutz"
Diagnosed with Ulcerative Proctitis 1999, changed to Ulcerative Colitis 2002.  J pouch surgery Oct 5, 2009


lipgloss
Regular Member


Date Joined Jan 2008
Total Posts : 70
   Posted 10/13/2009 3:00 PM (GMT -6)   
 
gr8 2 hear ur well,i had my ileo jan 2008,i was due a reversal in july 2008, but oppted to wait until dec cos was enjoyin bein uc free.. it takes tyme to get used 2 it but then it's like it was always there....i had my reversal dec 2008 n am happy i had my surgeries even thou i went thru so much pain and agony(if u read my mails).
 
i wish u d best of luck....it's nice to speak 2 poeple hu no wat ur goin thru..
 
tc.....xxxx
 
samie

BetterHalf
Regular Member


Date Joined Oct 2009
Total Posts : 39
   Posted 10/14/2009 8:21 AM (GMT -6)   
Darlene - It sounds like you are on a steady road to recovery. I am so happy for you!

Question - How did you come to have a home care nurse?

Also, thanks for the info about the length of the surgery! I am already anxious about how things will go tomorrow. It will help a LOT that my husband's brother and his wife are coming to the hospital to be with me that day! They are just wonderful people! And, I bought a magazine and book (and snacks!) to help pass the time.

Continue on your recovery, Darlene!

Collicat
Veteran Member


Date Joined May 2009
Total Posts : 827
   Posted 10/14/2009 8:39 AM (GMT -6)   
We just heard from Dillon's surgeon and blood work that was done yesterday came back.....IT IS NORMAL!!!....this is the first time in two years. Just to let you know what you have to look forward to! yeah

BetterHalf
Regular Member


Date Joined Oct 2009
Total Posts : 39
   Posted 10/14/2009 9:28 AM (GMT -6)   
Collicat - "NORMAL"
Isn't that a wonderful word to hear?!

Yay for your son!

Nutz
Regular Member


Date Joined Jul 2009
Total Posts : 149
   Posted 10/14/2009 11:18 AM (GMT -6)   
Thanks lipgloss (samie). Glad to hear that you are also feeling well! Have you had any complications since your reversal? I have only had my bad for 9 days now and I am feeling the "urge" to want to use the bathroom. Is this normal? Will anything come out? I thought everything was supposed to be sealed off for now that I have the bag.

BetterHalf, I live in Michigan and the hospital I went to (Royal Oak, Beaumont) set me up with a home care nurse. It was automatically part of my discharge planning. I think they call i the "continuing care" department that sets it up. Your insurance will deem which home health care agency you can use but it is totally worth it. She is going to come out 2 days a week (tues/fri) to change the bag completely. I think I have to pay a 10% copay per visit (which equals $15 or so) but it is soooooo worth it! It is very hard to adjust to the bag. I am still having a hard time being a nurse and all.

Collicat- wow, normal! what a wonderful word! when is dillon's reversal scheduled?
Darlene "Nutz"
Diagnosed with Ulcerative Proctitis 1999, changed to Ulcerative Colitis 2002.  J pouch surgery Oct 5, 2009


Collicat
Veteran Member


Date Joined May 2009
Total Posts : 827
   Posted 10/14/2009 5:52 PM (GMT -6)   
Hi Nutz. Dillon's reversal is scheduled for Jan28. He was very sick when he had his colon out and they want to give him lots of time to really get his health and energy back. Just to add to the discussion about the home care. We also have a nurse that comes to the house and it was all set up by the hospital and is free of charge including all the appliances. We do live in Canada though so things may be different.

Dillon also has the "urge" to have bowel movements and we were told this is completely normal. For the moment he has about 6 inches of rectum left which continues to make mucus. This segment still has UC and thus bleeds as well. He has been told to expect to have a mucosy BM about once a day. I would expect that you would have sort of the same thing. Even though the waste is diverted to the ileostomy there would still be the mucose etc in the rest of the bowel that needs to be expelled. I would most certainly ask your doctor though.

BetterHalf...we are thinking of you...I know you will not get a lot of sleep tonight. Dillon's surgery took about 3 hours but he was in recovery for over 5 hours. This had to do with a slow respiration rate from the drugs and all that was needed was time to rectify it....however they would not let him out of recovery until that time. So...not to worry if things take longer than expected.

Nutz
Regular Member


Date Joined Jul 2009
Total Posts : 149
   Posted 10/14/2009 8:28 PM (GMT -6)   
Thanks a lot regarding the "urge" question Collicat. I did call the doctor and he also said that it was normal. After I got another one of the urges, I sat on the toilet and liquidy stool just leaked out. It happened 3 times today. I was told that the my rectum is still intact- is it not longer than 6 inches? My dr had said that he would keep a tiny amount of my colon at the very end as well. I guess I should check on the number of inches. I am hoping to schedule my reversal in 6-8 weeks. I wasn't too bad off when I had surgery so hope to heal quickly. I hope all continues to go well!!

I will be thinking of you and your husband Better Half!
Darlene "Nutz"
Diagnosed with Ulcerative Proctitis 1999, changed to Ulcerative Colitis 2002.  J pouch surgery Oct 5, 2009

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