Final j-pouch surgery

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Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 1/22/2009 10:14 PM (GMT -6)   
Hi everyone, just completed the second and final j-pouch surgery last Wednesday. Surgery went well but I had more pain than expected. They don’t seem to want to give me too much painkiller. I spent 4 hours in the recovery room. When they finally sent me up to my room it was déjà vu all over again. They put me in the exact same room and bed position I was in last time. I’m too tired and week to go into much detail. I’ll write back later.
Paul
Diagnosed in 2000 at age 43 with UC. Colon removed October 20/08.
Bad reaction to Asacol, Pentasa and Dipentum - can’t take any more 5ASAs.
Prednisone - worked well for 1 month, then side effects became unbearable.
6-MP - blood tests showed not metabolizing properly.
Corticosteroid enema, Flagyl, Ciprofloxin, VSL#3, Adacolumn Apheresis – no effect
Methotrexate with Remicade - 7 infusions with no improvement
Folic Acid and B12 injections.
Abatacept trial - no effect
Visit our photo albums at: http://www.laflammefamily.ca 


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5185
   Posted 1/22/2009 11:47 PM (GMT -6)   
Bravo, Paul, you did it!!!!!!!!!!!!! Thanks so much for posting; we don't doubt that you're exhausted at this point. Sorry about the room & its bad association with October post-surgery ordeal. RE pain relief: I think Bennie posted that Bratcat had a patient control device the day after her reconnect surgery. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16449
   Posted 1/23/2009 8:03 AM (GMT -6)   
Great news! Glad to hear you are doing well even though you're in some pain. I hope you heal quickly and you're ready to get out and live life without all the pills and BMs.

Diagnosed with proctitis in March 2007 - Treated with Canasa 2x Daily
Diagnosed with UC December but had symptoms months ago - Treating with Asacol (feel hopeless)


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 1/23/2009 8:35 AM (GMT -6)   
You're pretty much done! That's so exciting! Get plenty of rest and I hope you recover quickly.
Female, Age 20
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (6 infusions), 2.4 g Lialda, Forvia, 6 Colazal, 1 Anucort, Culturelle, Fish Oil, Calcium/Vit D supplement, 20 mg Prozac, VSL #3
 


jano437
Veteran Member


Date Joined Jul 2005
Total Posts : 1614
   Posted 1/23/2009 3:16 PM (GMT -6)   
Great news. Rest up and get well soon
Diagnosed July 2005 with Pancolitis
Asacol 4 tabs 3 times daily
Pro-Bio
Forvia
calcium
Entocort 3 in the morning


Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 1/24/2009 10:30 PM (GMT -6)   
Hi everyone, sorry I didn’t get back to you sooner but I haven’t been feeling well up until now. I’ll post a little more about my resent surgery.

I arrived in admitting at about 11:00 am for my 1:30 pm surgery on Wenday January 21, 2009. They wouldn’t admit me right away because they didn’t have a room available for me. I guess they won’t perform surgery unless a room is available. We waited almost an hour and a half before I was admitted. I then went up to the surgery prep room where they took my vitals and had me sign a few forms. I changed into the normal hospital clothing. The surgeon stopped by to great me a half hour before surgery. She has very go bedside manners.

If you remember at my last surgery in October I participated in a sleep apnea study before and after surgery. As a result of that study I received a letter just before Christmas that stated I have severe sleep apnea. I had no idea that I have it. Because of that they were reluctant to give me more pain killer than needed. I would also have to spend extra time in the recovery room and receive oxygen the first night.

At 1:30 pm they walked me into the operating room and I lied down on the stretcher. They connected the IV and took my vitals. They gave me oxygen and had me start counting. I don’t think I got very far and I was out cold. I woke up in the recovery room and had to stay there for 4 hours because of my sleep apnea. I finally got up to my room at about 8:00 pm and my wife and daughter were sleeping on the chair.

I was in a lot of pain for the first 2 days. They had to get a doctors permission to get extra pain killers. They ordered morphine but they were reluctant to give it to me at first because my blood pressure was low. When they contacted a doctor he said it was ok. I had to spend the first night with an oxygen line to my nose because of the sleep apnea. After my first surgery I had a morphine pump that continuously gave me pain killer and I had a button that I could press for extra pain killer if needed. This time I had to ask the nurse for it and it would take her 10 to 15 minutes to get it to me.

Most of Friday I felt very sick. I was on water only. I felt like I was going to throw up any time. My stomach was very bloated and I threw up once. I finally had my fist bowel movement that night. It was partly in my bed but only a small amount. I quickly went to the washroom and a flood of dark green liquid came out. I thought I was doing better then over night I went to the washroom every 1 ½ to 2 hours and I threw up once again. In the morning I was feeling terrible and they asked me if I wanted to start a clear liquid diet. I really didn’t want to. I am still on water only.

Saturday afternoon I managed to get some sleep and my bowel movements have slowed down. I am now feeling a lot better. As I said earlier I was in the same room I was before at my last surgery. At about 5:45 they came in and wanted to move me to another room. They wanted to setup my old room for women only. I told them I was willing to have a female room mate but they didn’t think that was a good idea. My new room is just 3 rooms down the hall on the same side. I no longer have a window and my phone number has changed. I had to call all my friends and family to let them know. Also the phone line in this room is shared with my roommate. The other room had separate lines. And to top it off I had a television in the other room but they couldn’t get the TV in my new room working until tomorrow morning. That is why I have the time to type this, no TV.

That is my story for now. Take care,
Paul
Diagnosed in 2000 at age 43 with UC. Colon removed October 20/08.
Bad reaction to Asacol, Pentasa and Dipentum - can’t take any more 5ASAs.
Prednisone - worked well for 1 month, then side effects became unbearable.
6-MP - blood tests showed not metabolizing properly.
Corticosteroid enema, Flagyl, Ciprofloxin, VSL#3, Adacolumn Apheresis – no effect
Methotrexate with Remicade - 7 infusions with no improvement
Folic Acid and B12 injections.
Abatacept trial - no effect
Visit our photo albums at: http://www.laflammefamily.ca 


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5185
   Posted 1/24/2009 10:53 PM (GMT -6)   
Many thanks for updating us, Paul. I didn't realize that you had done a post-surgery no. 1 continuation of the sleep apnea trial. Gads, it must be a good thing they didn't know you definitely had it back in October-- because they might not have given you enough morphine then when you felt truly miserable-- eh? I think you're right to delay diet increment if you don't feel up to juice, etc. just yet. Sorry you didn't get the female roommate (LOL!) or even a TV + lost the window view, besides. Hopefully, you can find some distraction via laptop-- in addition to HW, I mean. Hang in there! You're going to be in a lot better shape by the start of spring this year: ready for yard work & all. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 1/25/2009 10:36 AM (GMT -6)   
Thanks Old Hat, I woke up only twice last night to go to the washroom. I don’t get the normal sensation in my rectum that I would expect. Instead I get terrible cramping and bloating in my stomach. I get the cramping every half hour or sooner and it lasts for a few minutes. When it won’t go away after 5 minutes I know it is time to go to the washroom. They gave me a water spray bottle to spray my rectum every time and some cream to apply to my rectum. I have used it religiously very time and I have no problems with my rectum.

This morning when I saw the doctor he wanted to start me on solid foods. I asked him if I should be on liquids first and he said he will give me both and I can take whatever I can tolerate. This morning I had rice krispies with sugar and milk, cheddar cheese, a bagel with margarine and orange juice. Such a simple breakfast tasted so good. I ate everything except for only a few bites of the bagel.

Take care
Paul
Diagnosed in 2000 at age 43 with UC. Colon removed October 20/08.
Bad reaction to Asacol, Pentasa and Dipentum - can’t take any more 5ASAs.
Prednisone - worked well for 1 month, then side effects became unbearable.
6-MP - blood tests showed not metabolizing properly.
Corticosteroid enema, Flagyl, Ciprofloxin, VSL#3, Adacolumn Apheresis – no effect
Methotrexate with Remicade - 7 infusions with no improvement
Folic Acid and B12 injections.
Abatacept trial - no effect
Visit our photo albums at: http://www.laflammefamily.ca 


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5185
   Posted 1/25/2009 8:21 PM (GMT -6)   
If you go back to Nov. 10-17 forum posts, you'll probably be able to find what Bennie wrote after Bratcat's reconnect surgery. I think she said that the doctor wanted Bratcat to have a 3-meal day before discharging her from hospital. So-- you're on your way! Hope the food agrees. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 1/26/2009 11:23 AM (GMT -6)   
Yesterday things were getting better. They freed me up from the IV pole but left the line in my hand in case they needed to reconnect it. I took my first full shower and it was great. They removed the wound dressing and left it off. I have 11 staples holding it closed. They are to be removed about 14 days after surgery. They said they will send me home with a staple removing tool and I’m to make an appointment with my family doctor to have them removed.

I only ate a small amount for lunch because I didn’t like what they gave me. I was really looking forward to dinner and it looked really good. It was grilled salmon with mash potatoes and diced squash. Shortly before dinner I started feeling real sick so I went to have a bowel movement but it didn’t help me feel better. I was feeling so sick I only ate a few bites of dinner. I asked for some pain reliever before bedtime and it helped tremendously. I actually saved my dessert (sliced peaches in juice) and ate it before going to bed.

Last night I had the best sleep since being in the hospital. I only woke up once to go to the washroom. The doctor this morning said that based on how well I do after breakfast and lunch, I may be going home today. That is what they said every day for over a week last time before I went home. I don’t really feel like going home just yet.

Take care,
Paul
Diagnosed in 2000 at age 43 with UC. Colon removed October 20/08.
Bad reaction to Asacol, Pentasa and Dipentum - can’t take any more 5ASAs.
Prednisone - worked well for 1 month, then side effects became unbearable.
6-MP - blood tests showed not metabolizing properly.
Corticosteroid enema, Flagyl, Ciprofloxin, VSL#3, Adacolumn Apheresis – no effect
Methotrexate with Remicade - 7 infusions with no improvement
Folic Acid and B12 injections.
Abatacept trial - no effect
Visit our photo albums at: http://www.laflammefamily.ca 


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 1/26/2009 6:31 PM (GMT -6)   
So glad to hear things are going better, Paul.
I'm curious, how does the cramping feel when you have to have a BM? I mean, I'm sure it's probably more painful now than it will be later when you're recovered since everything is so new and tender, but would you say it's already better than UC cramping? Are you feeling any urgency when you have to go?

I hope you're able to go home soon and start getting back to your life. Thank you for posting and keeping us updated, I always enjoy reading post-surgery stories because it makes me a little less nervous of the idea of getting it done someday (or sometimes more nervous, depending on the story!)

Female, 23, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in femur head & lumbar spine from long term prednisone use...

Current Meds:
Lexapro 10mg, Azasan 100mg

 
 


Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 1/26/2009 9:00 PM (GMT -6)   
Thanks ediekristen, its hard for me to compare my cramping to UC. With UC the only time I had cramping was when I was having a bowel movement, I never had them any other time. Now it is the opposite, cramping and bloating before a bowel movement and it quickly goes away during it. Also my cramping now aggravates my wound incision with a sharp pain. I feel no urgency at all. It is real weird. The only way I know I have to go is from the bloating and cramps not going away. They wanted to send me home today but I wasn’t feeling well. I think there is a very good chance I will be going home tomorrow.
Paul
Diagnosed in 2000 at age 43 with UC. Colon removed October 20/08.
Bad reaction to Asacol, Pentasa and Dipentum - can’t take any more 5ASAs.
Prednisone - worked well for 1 month, then side effects became unbearable.
6-MP - blood tests showed not metabolizing properly.
Corticosteroid enema, Flagyl, Ciprofloxin, VSL#3, Adacolumn Apheresis – no effect
Methotrexate with Remicade - 7 infusions with no improvement
Folic Acid and B12 injections.
Abatacept trial - no effect
Visit our photo albums at: http://www.laflammefamily.ca 


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5185
   Posted 1/26/2009 9:21 PM (GMT -6)   
Hey there, you're rid of the bag!!!!!!!!! Isn't that great? You don't have urgency, either. So it's probably like ediekristen says, the tenderness from your surgery makes the cramping feel worse now, but that will go away as you heal up, get staples removed, etc. You're right, though, to not let them discharge you 'til you feel ready. I think you avoided many problems in October by sticking to your guns on that account. Thanks again for keeping us informed; it really is educational for us adult UCers, especially. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 1/27/2009 7:01 AM (GMT -6)   
I saw the doctor this morning. He wants me to go home after breakfast. He looked at my incision and wants the nurse to take out the staples before I go home. I’ll report back once I get home.

Take care,
Paul
Diagnosed in 2000 at age 43 with UC. Colon removed October 20/08.
Bad reaction to Asacol, Pentasa and Dipentum - can’t take any more 5ASAs.
Prednisone - worked well for 1 month, then side effects became unbearable.
6-MP - blood tests showed not metabolizing properly.
Corticosteroid enema, Flagyl, Ciprofloxin, VSL#3, Adacolumn Apheresis – no effect
Methotrexate with Remicade - 7 infusions with no improvement
Folic Acid and B12 injections.
Abatacept trial - no effect
Visit our photo albums at: http://www.laflammefamily.ca 


Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 552
   Posted 1/27/2009 7:31 AM (GMT -6)   
Yay! Glad you're going home. Even better that the staples are going to be removed. Bratcat had no staples for her last surgery but hated them for her first. Feel good. Enjoy your own bed!

--Mom of bratcat (17 years old) and nonamejames (20 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Flared Fall 2006, Fall 2007, Spring 2008
Asacol, Rowasa, hydrocortisone enemas, prednisone, 6-mp, Remicade
7/3/08-Step 1 j-pouch surgery and no more meds!
11/10/08-Step 2 reconnect!
 
Son nonamejames was diagnosed with Crohns in Spring 2008
Asacol, Pentasa, 6-mp


Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 1/27/2009 8:30 AM (GMT -6)   
Wohoo! Going home and getting the staples out at the same time. Gotta be wonderful. Congrats!
26 year old, Married, Female.
Diagnosed with UC since March 2007

Taking Humira and Imuran since May 2007 (Currently in remission since May 2007)
Taken off Imuran 1/15/09
Only taking Humira.

Can't take Asacol, Allergic to Remicade


Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 1/27/2009 2:20 PM (GMT -6)   
Thanks everyone, two young student nurses took my staples out and I survived. I arrived home about an hour ago and I plan to take a nap this afternoon.

Take care,
Paul
Diagnosed in 2000 at age 43 with UC. Colon removed October 20/08.
Bad reaction to Asacol, Pentasa and Dipentum - can’t take any more 5ASAs.
Prednisone - worked well for 1 month, then side effects became unbearable.
6-MP - blood tests showed not metabolizing properly.
Corticosteroid enema, Flagyl, Ciprofloxin, VSL#3, Adacolumn Apheresis – no effect
Methotrexate with Remicade - 7 infusions with no improvement
Folic Acid and B12 injections.
Abatacept trial - no effect
Visit our photo albums at: http://www.laflammefamily.ca 


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 1/27/2009 2:44 PM (GMT -6)   
Was it painful having the staples removed?
How are you feeling now? Enjoy your nap, it must be nice being back in your own bed! Hope everything continues to go smoothly for you.

Female, 23, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in femur head & lumbar spine from long term prednisone use...

Current Meds:
Lexapro 10mg, Azasan 100mg

 
 


potty girl
Veteran Member


Date Joined Dec 2006
Total Posts : 835
   Posted 1/27/2009 2:52 PM (GMT -6)   
Glad your doing good with it. Hope you feel just like a new person shortly.
Rona

synthroid .088 mg, lowpressor 50 mg x 2, cozaar 25mg x2, imdur 30 mg
nitroquick, proventol, plavix 75 mg, protonix 40 mg x 2, asacal 400mg x 9
carafate 1 gm x 4, zyrtec 10 mg, rhinocort aqua nose spray, fish oil,
potassium.


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5185
   Posted 1/27/2009 8:35 PM (GMT -6)   
Hurray! Now the worst of it is definitely behind you. Take it easy so that your wound has time to heal. Did the hospital give you any diet recommendations or limitations? / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 1/27/2009 8:41 PM (GMT -6)   
Paul-
I have been following your story closely and I admire your courage and determination to get through this. Selfishly, I have read all of your posts because I am at the point where I could be going through surgery very soon.

Believe it or not, I am most concerned about the jpouch and whether or not it will work.

I wish you the very best.... and know that you have a fan out here.
Jackie, 43
Pancolitis, DX October 06

Lexapro, colazal 3x3, Synthroid, Protonix, 6MP (75 mg)
Prednisone 20mg, Iron, Vitamin D
Surgery almost certain


Y2K Bug
Regular Member


Date Joined Jul 2008
Total Posts : 114
   Posted 1/28/2009 8:35 AM (GMT -6)   
sorry to hear that your path to wellness is being so difficult. but it will all be worth it. in 12 months time UC will be a distant memory.
 
tongue  
Peter
 
dx 1985
prednisolone 9mg tapering
gave up on meds after infliximab (remicade), humira, salofalk (5-asa enema), entocort, Azathioprine, steroid emenas, abadacept
 
have temp ileostomy, reversal probably in Mar/Apr 2009.
 
and I don't know where the nearest toilet is!


Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 1/28/2009 8:28 PM (GMT -6)   
Thanks everyone, recently the cramps and bloating I had are diminishing and I actually had some mild urgency today. I must emphasize the word mild. When I left the hospital they gave me a prescription for the pain reliever Percocet. I took some yesterday after I got home but I didn’t feel I needed any today.

They sent me home with a diet similar to the last surgery. I should not eat fresh vegetables, skins or seeds. Some vegetables are ok as long as they are well cooked. Most canned vegetables except corn are ok.

Ediekristen, about a half hour before having the staples removed, I took a pain reliever (Percocet). There were 11 staples and some of them I had a slight pinch and sharp pain when they were removed and others I could hardly feel.

Take care,
Paul
Diagnosed in 2000 at age 43 with UC. Colon removed October 20/08.
Bad reaction to Asacol, Pentasa and Dipentum - can’t take any more 5ASAs.
Prednisone - worked well for 1 month, then side effects became unbearable.
6-MP - blood tests showed not metabolizing properly.
Corticosteroid enema, Flagyl, Ciprofloxin, VSL#3, Adacolumn Apheresis – no effect
Methotrexate with Remicade - 7 infusions with no improvement
Folic Acid and B12 injections.
Abatacept trial - no effect
Visit our photo albums at: http://www.laflammefamily.ca 


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 1/29/2009 12:04 AM (GMT -6)   
Hey Paul it looks like the worst is over for you :)

I am curious about the cramping when you had UC...how long after did your cramping last following a bm

Thanks
Moderate Pancolitis
Dx'd 05/2007
8 Pentasa per day (4/2)
Corti Foam p.m. 5X per week and canasa every other day
Natural anti fungal, anti inflammation supplements and Probiotics.
Bowel Soother and IntestiNew, Fish Oil, Calcium, Multi Vitamin and Melatonin
Eliminated Fructose and Corn Syrup
Reduced sugar in my diet by at least 70%
Reduced wheat products by 70% 
Could never tolerate artificial sweetners
I excersice daily (unless like now : (  I've lost too much weight)
Did I happen to mention I HATE this disease!!!
 
*Recent Changes In Blue*


Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 1/29/2009 9:14 PM (GMT -6)   
The cramping came with my BM and lasted only a short time afterwards (a few minuets) when I was on the toilet. I wouldn’t leave the toilet until they were over.
Paul
Diagnosed in 2000 at age 43 with UC. Colon removed October 20/08.
Bad reaction to Asacol, Pentasa and Dipentum - can’t take any more 5ASAs.
Prednisone - worked well for 1 month, then side effects became unbearable.
6-MP - blood tests showed not metabolizing properly.
Corticosteroid enema, Flagyl, Ciprofloxin, VSL#3, Adacolumn Apheresis – no effect
Methotrexate with Remicade - 7 infusions with no improvement
Folic Acid and B12 injections.
Abatacept trial - no effect
Visit our photo albums at: http://www.laflammefamily.ca 

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