Second Surgery Summary

     My ileostomy reversal surgery started at 7:30 AM on Monday.  I was in recovery by 9:30 and in my room by 10:30.  I was on the computer posting the update just a few minutes later.  This second surgery was a piece of cake compared to the first step done in January. 

     From what I was told before this surgery, the length of the hospital stay depends largely on how long it takes for the new plumbing to start working.  I had heard that it could take a day or two, or possibly much longer.  I was "in business" by 2:00 AM Tuesday morning.  By Tuesday afternoon I was using the toilet regularly every few hours.  This was great for two reasons.  First, it meant my diet could be upgraded from clear liquids and second, it meant my hospital stay would probably be short.

     When my bandage was changed for the first time,  the tape that was used on the first dressing that was put on in the OR tore the skin on my abdomen.  It was some type of heavy-duty foam tape.  The spots from the tape were more painful than the actual incision from the surgery.  The surgeon left a small opening with a wick in it to help it drain.  The wick was removed before I left the hospital.  The opening will gradually close.  In the meantime, I just keep a large band-aid over it.

     The only problem I had while in the hospital was that my arm started to swell on Wednesday.  The IV line had to be taken out and put on my other arm.  Jennifer, my nurse, was able to get the new line in without any problems.  The only inconvenience was that I had to take a break from Wii.  

     I was released on Thursday afternoon.  It's good to be home!!! 

Second Surgery

Had my second surgery at 7:30 this morning.  It lasted 2 hours and everything went great!!! Just had my liquid lunch of broth, can't wait for solid foods.  

Just 4 more days until my last surgery!!

I know it has been a long time since I last updated my blog, sorry. I have no excuse other than I have been fishing way too much to take the time to sit down and post to my blog.  As far as my health goes I am doing awesome.  I've easily been able to put the weight back on that I lost around the time of my first surgery.  I eat just about everything I can get my hands on.  

I did have one set back that delayed my surgery about a month.  Close to three months after my first surgery I had an abscess form near my pouch that had to be cut and drained.  That was an uncomfortable two weeks.  My surgeon stitched a tube into the abscess which allowed it to drain and heal up.  The tube had to stay in for 2 weeks, not fun.  We decided to wait another month before going in for my last surgery just to make sure that it didn't come back and that no other problems would arise.  

Overall I am feeling great!  I eat anything I want, I can go and do anything that I want, both things that I couldn't do before the surgery.  I go in Monday morning for the final surgery and will probably be in the hospital the rest of the week.  This surgery is much shorter and less complicated than the first.  Basically all the surgeon will do is remove the ostomy bag and reconnect my small intestine inside my abdomen.  I can't wait to be done with the bag!

6 Weeks Post-Op

Well today is 6 weeks since my first surgery.  I am officially halfway to my second and final surgery.  Recovery has been great so far.  There's only been a few changes in the past few weeks.  The one I am most excited about was taking my last pill of Prednisone.  It is a nasty drug that I have been on for over a year.  So, I am officially not taking any medications for ulcerative colitis! This is the first time since I was diagnosed at 17!  I have also changed the appliance that I wear.  At first I was using a one piece, transparent bag which is what I was given in the hospital.  I wasn't a huge fan of being able to see all the "output" so I changed to a two piece, beige appliance.  I can tolerate the bag a little better now since I don't have to see the contents every time I look at it.  The new bag also has a smaller adhesive area that attaches to my skin, thus a smaller area that can become irritated.  I have slowly become more active over the weeks.  I was able to make a trip out to Dallas for the Mardi Gras parades with my family.  We had a great time and it was really nice to finally get out of the house for awhile.  I have also been able to get back into my parents' hot tub.  I missed it after a month of not being able to get in.  I am meeting with my surgeon on Monday and will hopefully be able to schedule a date for my second surgery.

3 weeks after surgery!

Today it has been three weeks since my first surgery and things are going well.  If you had asked how I was doing last week you would have heard a much different answer.  I picked up some sort of flu like virus and had a fever and congestion all of last week.  That made for some pretty miserable times.  I felt okay over the weekend and took a trip to our lakehouse for a little change of scenery.  I attempted to fly fish on Saturday.  That proved to be a bad decision. I had no luck actually catching a fish and found out that my body was not ready for something that active.  My fever picked back up after the fishing attempt and stuck around all that night.

I  have finally gotten comfortable with looking at my stoma.  I use to get light headed and almost pass out every time I had to change my bag and clean around the stoma.  I no longer need a nurse to come twice a week to change my bag out.  I can do it with a some assistance from my mom.  Overall, things are going well now.  I can walk a little better everyday and it feels great to eat anything I want now.  I ate a huge frito-pie during the Superbowl.  It was awesome.  I still have to get up a few times a night to empty the bag, but that is completely normal and expected. I have one little spot beside my stoma that has been getting irritated.  This is probably from stool leaking at the seal around the stoma. The stool that comes out of the stoma has digestive enzymes in it that will even digest skin that it comes in contact with.  There is a powder that heals the sore that I put on every time I change the bag. Hopefully, this will be healed up quickly and won't become a continuous issue.  I am meeting with my surgeon's e.t. nurse on Monday to check the stoma and make sure I know how to heal the sore and prevent one from coming back.

I received a call from the hospital this week to ask me about my care there.  I told them that overall I thought my care was good, except for that first visit from the e. t. nurse.  I received a second call a little later from a manager.  He told me to send him an e-mail with all the details. Shortly after I sent it, I got an e-mail from another manager that said he is following up and would be getting back to me.  In the e-mail I recommended additional technical training, as well as additional sensitivity training for this woman.  My surgeon told me at my visit today that there was another complaint about her after mine.

 

7 Days After Surgery

I had a good night.  After seeing my surgeon I signed the release papers and was on my way.  It was great to be home.  My Mom stocked the fridge with snacks I was eating in the hospital.... puddings, popsicles, juice, ice cream and yogurt.  To my surprise,  my weight is 154 lbs.  That is exactly what I weighed the night before surgery.  I expected to lose a lot of weight.  My surgeon said the average colon weighs about 6 pounds.  I was prepared for a big loss when I stepped on the scale.  I guess the constant snacking did the trick.

6 Days After Surgery

I felt fine today.  My appetite is back and the pain is manageable.  My IV was removed again tonight.  If all goes well, I'll go home tomorrow after my surgeon sees me in the morning.

5 Days After Surgery

Five days after surgery I hit the wall.  I woke up in pain (about a 7 or 8).  It was the most pain I had felt since surgery.  The IV had been removed and I was taking only pain pills every four hours.  They were not helping.  I also began running a fever.  As the day went on, things didn't improve.  My appetite had been good, but I just felt too lousy to eat.  I got up to use the bathroom and passed out cold. My Dad was standing right outside the door.  I was out like a light on the floor.  Nurses rushed in and got me to sit upright on the floor.  I passed out again.  They called in a big male nurse who basically picked my whole body up and put me back in bed.  My fever was up to 102 and my blood pressure was dropping.  They put my IV back and gave me morphine and fluids.  My fever broke about an hour later and the pain was down to a 3 or 4.

The exact cause of why I "crashed and burned" is unclear.  My surgeon believes it was a combination of things..... the Perfect Storm.  When I was in the bathroom I passed a fair amount of blood that had pooled in the pouch since surgery.  The sight of the blood was enough to make me black out.  In addition, I probably overdid it on Sunday.  I felt so good I was up and walking around most of the day.  I was without the IV for over 24 hours and I wasn't drinking enough fluids.  I will definitely be more aware of my fluid intake. 

Fourth Day After Surgery

Today has been my best day yet.  My IV was removed since all of my meds can be given orally.  It's good to be able to move about freely without pulling an IV pole.  I have been lucky enough to have yet another awesome nurse.  Her name is Lorraine and she is from upstate New York.  She actually has two careers.  She is a nurse and a stewardess.  She is excited to be included in this blog, as it is her first.  She said she was going to tell her friends and family to check it out.  When I asked her if I could take her picture she said, "Sure, how does my hair look?"

I spent the afternoon making fly fishing lures.  A friend brought me a kit and a "How-To" DVD.  It was great to be able to sit up and do something that is not medical related.  

Third Day after Surgery

My day started at 5 AM.  Doha, my night nurse, thought that she would like to be the one to remove my catheter and remove my line for my morphine pump before she was off at 7AM.  Doha was great.  She is from Lebanon.  She told me about an uncle who lives there who lost both arms below the elbow from a bomb explosion.  He also has an ostomy because of injuries from that blast.  She told me that he has been that way for several years and he is able to manage his appliance without his arms.  That is amazing.

After removing the catheter it was much easier to get up and move around.  I emptied my pouch for the first time.  It was a pretty simple task.  I had no problems.  I had watched a video that a guy posted on U Tube.  It was actually a big help.  I washed up and changed into my own clothes.  It was good to be out of a hospital gown.  I found that the easiest way to clean up is to use Wet Wipes.  This will have to work until I can take a shower.

After changing I took another stroll in the hall.  It was nice to be in regular clothes.  Those hospital gowns can be a bit drafty.

The rest of the day and night was uneventful.  I had a lot of visitors and really enjoyed that.  It made the day fly by.  It is still a little challenging learning to mange the pain without a PCA, but I am learning.  I'm on oral pain killers now, every three to four hours.

2 Days After Surgery.

In the morning I got out of bed and took my first stroll on the floor.  Sarah, my day nurse, walked with me.  It was great to be out of bed and moving.  Sarah has been a great nurse.  She actually decided to become a nurse after a boyfriend with UC had J-Pouch surgery.  She was fascinated the procedure and how his life improved dramatically after his recovery.  Sarah's favorite cases are GI surgery.  She said her least favorite cases are respiratory illnesses.  Sarah's quote:  "I can deal with poop all day, but if one patient coughs or spits on me, I feel like I need to shower". 

The other positive development was a change in diet.  My diet went from "clear liquids" to "full liquids".  That may not sound like such a big deal, but trust me, it is.  I was able to add ice cream, puddings, yogurt, and soft cereals like oatmeal and cream of wheat.

Unfortunately, things went downhill, in a big way, in the afternoon.  I had a visit from an ET nurse whose job is to help and educate patients who have an ostomy.  Her visit was nothing short of catastrophic.  I could probably write a short novel describing the sequence of events that occurred between 3PM and 6PM, but I am going to try to just share the highlights, or should I say "lowlights".

When she first saw my pouch she said that it was too full and that I should never let it get that full again.  It was pulling away from the skin and starting to leak a bit.  At that point I had not yet emptied it myself.  The nurses were handling that.  She scolded me like I was a child.... NOT A GOOD START.

As she was emptying she spilled the contents all over me, the bed, and the floor.  Her comment was, " This should teach you a lesson.  Never let the bag get that full".  Are you kidding me? Could this get any worse?

Yes, it did get worse.  In her attempt to clean up she used a white hospital towel.  Thats right, she used the same soiled towel that she to clean the bed, floor, and my body.  My main incision had been oozing a little blood all day.  This is totally normal, but it means that it has a small opening.  So basically, she was rubbing stool in my open wound.  I was starting to lose it at this point and I asked her if she could use a clean towel.  Her response was, "It's no big deal".  She really said that. 

I guess she was upset at this point because as she was cleaning up with a fresh towel she got very rough while wiping around my stoma.  It started to bleed.  It is normal to bleed a little, but this was a steady stream.  I was two days post- op and it was the most blood I had seen. 

After she was finished cleaning me up, which was a poor job at best, she started to put a new appliance on.  At this point, I couldn't even look at her and I wasn't hearing a word she was saying.  She was having a difficulty time sizing and positioning the appliance.  She then tells me, " Your incision is incorrect. It is too close to your stoma.  It should be a vertical mid-line cut. I have never seen one like this....well maybe, I've seen one other."  That was just what I wanted to hear.  That my surgeon had done my surgery incorrectly.  Obviously, by now, I knew that she was an idiot.  My surgery was done laproscopically and my horizontal is about 6 inches long and located a few inches below my navel.

Since she didn't get it right the first time, she took the first one off and tried with a second appliance.  I just wanted her out of my room.  I knew it was probably not done properly, but I didn't care.

After she left my room I called my regular nurse to come in and check everything.  I knew that the amount of bleeding was not normal.  She called my surgeon who was in another surgery at a different hospital.  After speaking to him, a team of four nurses, including the director of nursing for the hospital, came to my room and redid everything that the idiot ET nurse had done.  First they got the bleeding to stop, then cleaned everything and replaced the appliance.  That was the third one in three hours.

My surgeon came in about an hour later.  He had driven through rush hour traffic from another hospital to check on me.  I really appreciate the extra effort.  He assured me that everything was fine.  He said that I would be checked very carefully for any signs of infection in the coming days.  

It was difficult to understand how such an incompetent ET nurse made her way into this hospital.  Up until that woman walked into my room, everything was nearly perfect.  The care I was receiving exceeded all my expectations.  I found out later that night that the ET nurse who usually sees patients at this hospital is on vacation.  No one I talked to had ever seen her before.  She was brought in from another hospital.  My plan is to follow up with the appropriate " Quality of Care" person after I am home.  My goal is to make sure that she doesn't get a chance to do this to someone else.

Day after surgery!!

It is my first day after surgery and it went almost perfectly.  The operation lasted 5 hours then I had another hour in recovery.  There were a few spots which bled a little heavy after being cut it was an easy fix for the surgeon.  I am on a liquid diet only and can't wait to get my hands on some pizza, a burger, or a chicken fried steak.  The nurses here are great and take really good care of me.  I was even able to get out of bed about 30 minutes ago, I walked to my bathroom and wiped off with towels then walked back on my own.  I have 3 small incisions(an inch) where the tools could get through, another one about 2 inches were my stoma is and then a larger 6 inch incision below by belt where the colon was removed.  I have a little button to push for morphine, which has gotten plenty of use. I can push it once every 8 minutes which it plenty. 

Night Before Surgery

Well it's the night before step one of my j-pouch surgery.  I am finishing up my prep and can't believe it took till now to find one that is bearable.  I have had 4 colonoscopies using Movi-prep each time and dreaded doing the prep.  The taste of the mix and the amount of liquid I had to drink made for a miserable experience.  This time the docs did things a little different.  I took 4 Dulcolax at 3 this afternoon.  The next step was to mix a bottle of Miralax powder with 64 ounces of Gatorade, you can't taste the powder and the 64 ounces of Gatorade (8 ounces every 15 minutes).  I still got the same "effects" but did not mind drinking the solution.  

The only other thing that I need to do to be ready for the surgery is to wipe my body down with antibacterial wipes that the hospital supplied during my pre-test last week.  I'll clean my whole body tonight before bed then wipe my abdomen before I leave for the hospital in the morning.

The picture here is my stomach the night before surgery.  I had to shave with clippers because the surgeon said that razors will irritate the skin too much before surgery.  The little circle with the 'x' in the center is not a new tattoo. It is the location marked where my stoma will be.  The nurse marked it last week.  It is right above my belt line and below where my stomach folds when I sit down. 

My weight today was 154lbs.