Should I Get Surgery? (UPDATED!!!)

Hey Sue,

I do read the j-pouch.org forums too(a large reason why I decided to go for the j-pouch surgery), and from the majority of postings(not all), I shouldn't be feeling this bad, and going backwards rather than forwards. I was better at 2 weeks out than I am at 5 weeks out........I know I shouldn't be feeling great at 5 weeks out, but if I know my body, this isn't ever going to improve. It feels like it's not just a standard j-pouch problem that will improve.
Well, by the time I can actually get the surgery(at least another 5 weeks or more) to go back to an ileo i'll then know for sure if it's failed so I can always back out of the surgery if things start improving before that. UC was a breeze compared to this though..really!!

You're a great success story for the j-pouch Sue. I am really happy that it worked out for you so well. I also have admired your positive posts both here and on the j-pouch forums.

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Edit: Removed rant...

Post Edited (Adroen) : 1/5/2011 5:54:50 PM (GMT-7)

       At my first visit with my colorectal surgeon (I mentioned he refused to do a j-pouch on me because of my age and extended use of prednisone), I concluded he wasn't a big fan of the j-pouch anyway.  He never went into details, I just came to that conclusion by our conversation.

my expecations were really high too, and 4 weeks out, even though i felt great in some senses, i was so upset because i still had pain and lots of output and was so tired. in my head i thought i should have just bounced up ready to do a marathon.
Personally, i didnt try everything, i didnt try much, i didnt see the point in wasting time waiting on something that may or may not work, when there was a sure cure.

Hey guys! I want to give you an update, sorry it took so long!

SHORT VERSION: I had emergency surgery because I was septic and had a total colectomy with ileostomy. Planning on getting the j-pouch in April.


INTERESTING VERSION:
So I took your advice and looked up a bunch of stuff online, and scheduled an appointment with a surgeon on Monday (1/3/11) as well as a upper endoscopy and lower endoscopy for the that Thursday.

Here is where it gets interesting! On Sunday morning I start throwing up. I don't think too much of it, I figured maybe it was the tylenol or something. That afternoon I develop a fever of 102.6. My mom called my GI doctor and he told us to go to the ER. I, of course, dragged my heels because I hate the ER.

Anyway, we get there around 6:30 PM and they schedule me for a CAT scan. I'm tachycardic at 125 BPM. They FILL me with fluids and run a bunch of blood tests. My mom and I wait and wait and wait. She leaves around midnight. At about 1:30 I go into the CAT scan. Results are as expected, a severely inflamed colon.

So I keep waiting, I'm talking to some doctor or another where the overwhelming urge to go to the bathroom comes over me. Like, I had to go NOW. So I sprint to the bathroom where (TMI) I have a ton of diarrhea that is pretty much water. Feeling better, I go back. Once I am hooked up to the machines, the nurse swears because my BPM has spiked to 140 and my BP is 80/40. I start shivering. My temperature has risen to 104. I get the rigors and they do a billion blood tests on me. I can't stop shaking.

A doctor comes by and tells me that they are going to move me to a special room in the ER (later I found out that it was some sort of intensive care ward) where there will be more nurses around to check in on me. Everybody was so calm, I never suspected anything.

So they move me, and these nurses start sticking electrodes all over me, telling me that they are doing an EKG. I didn't think much of it, I was on pain medication. Then they tell me that they are going to insert a catheter. When I question them, they tell me that they want to measure my fluid output. It didn't hurt, surprisingly.

So I am lolling in my room, delirious from pain medication and fever, when they tell me that I might have to get a blood transfusion. It's early morning at this point. Then it dawns on me. I need to call my parents. I am very, very sick. I call my mom, no answer. I call my dad and he is waiting for the train. I said "NO YOU CANNOT WAIT FOR THE TRAIN I AM VERY VERY SICK!!". He decides to drive down, but he is about 45 minutes away.

I'm panicking a bit at this point. I can't contact my mother. A surgeon comes in and tells me that I may have surgery that day. She sort of explains what is going on. Another surgeon comes in soon after and tells me that I will be having surgery in the next four hours. She says that my colon wall is so thin that bacteria is leaking out into my bloodstream. I am becoming septic.

At this point, I am freaking out, but hoping that my parents will be there in time. I call and call my mom to no avail. I call her wife and tell her what is going on. Luckily she works nearby and leaves to come over the second I told her what is going on. She promises to get into contact with my mom.

Of course, the icing on the cake is when the next nurse came in and told me that I am on the waiting list for the Operating Room RIGHT NOW. Another surgeon person comes in and has me sign a sheet saying that I know I will be having surgery and that I understand the risks. I ask her a few questions, but what is there to ask? I need to have this surgery or I will DIE.

I'm in tears, trying to prolong the time before I have to go up to the OR. My mom's wife gets there right as they start wheeling me up to the room. She's in tears, but says she finally got into contact with my mom. The nurses had taken all my possessions by then, including my phone. Dad gets there and finagles his way to me soon after. We're waiting on my mom. Her wife is on the phone with her, the nurses are directing her to the waiting area, not to me. Finally, she manages to get up to me as the anesthesiologists are explaining what is going to happen. She must have driven like a madwoman to get there on time.

Since I was so full of fluids, they had to cut my ring off. I kiss my parents goodbye, and they give me a drug to help me "relax". I don't remember anything after that until I am getting a blood transfusion after the surgery, but that is still very fuzzy.

I also got pneumonia afterwards because when they took out my breathing tube I inhaled a bunch of fluid in it. They thought I had a pulmonary embolism, but luckily not! I was on oxgen for a while, though.

I had a total colectomy with ileostomy, and in April I am getting the reversal surgery and J-pouch. I was only in the hospital for a week, and it is 2 weeks today since my surgery. It was all such a blur, and I was so unprepared. I am still getting used to it.

I am so glad that you went to the Dr. when you did. What a horrible ordeal you have been through. I am so glad that you are on the other side of it and now on your way to recovery. How are you actually feeling now? I will continue to keep you in my thoughts.

     Wow ....you are very lucky indeed.  I had a dear friend who passed from sepsis in December of 05.  As I was reading your post, I thought how very similar your symptoms were to hers.  Hope your recovery is speedy.

Wow! Best wishes for a speedy recovery! :)

Thank you for the well wishes everybody! I'll try to answer you all.


Chris- I was thinking about surgery happening soon for similar reasons to yours. Humira was failing, I felt like if I waited my life would be even more messed up than it already was. I am actually really glad the surgery happened when it did. Now I just have to take a semester off of school, my parents can take care of me, and I have no job or insurance to worry about. If you think you have a better time in the (nearish) future to have the surgery done, try seeing if you can switch to Humira. I had skin problems on Remicade, too, and Humira made me feel good for at least 6 months. You definitely have to factor in a lot of things. Being prepared for the surgery is definitely a bonus I didn't have, as well as the fact that I easily could have died from sepsis if I didn't go to the ER when I did. If I were you, I would probably have the surgery before I graduate, but I don't know all your circumstances.

And thank you everybody! I had my staples removed today (Wednesday), but they noticed that I had a bit of an infection in the bottom of my incision that had healed over so they had to rip it apart and then pack the hole with gauze. That was unbelievably painful. I now have a 2 cm hole into my abdomen that I have to get repacked every day. It really freaks me out and I am not looking forward to the nurse visiting tomorrow. I have a bit of mucocutaneous separation around the stoma, but luckily that is fixed with some paste. They told me to eat more protein as I am not healing fast enough. Hopefully the incision hole will be healed in 1-2 weeks, but at least the rest of it looks good!

I'm doing some more food experimentation, I had a BLT today which went well! :D Definitely walking around more, playing some games on the wii and just being a bit more active. I'm going to try to lift some soup cans or something since my arm muscles have deteriorated. I lost 5 more lbs by accident so trying to eat more too. I'm 5'5" 120lbs right now, which isn't bad but I can't lose too much more before it is unhealthy.

Thanks again for all the well wishes! :)

I plan on getting the j-pouch surgery in April, I have an appointment with my surgeon to talk about it next week.

A question for those who had the 2-step j-pouch process (colectomy + temp ileostomy then j-pouch and reattachment later): how long were the recovery times? Will the second surgery be better or worse? My first surgery was not done laproscopically, can the second surgery be done that way?

((kcolwell)), wishing you an easy transition to the j pouch world..

Hey Kcolwell, I'd also like to wish you the best with your j pouch surgery.

I'm curious, did they construct the J pouch at the same time as your colectomy? I thought that when you need emergency surgery they typically just remove the colon and hold off on constructing the J pouch till later resulting eventually in three surgeries. Or are you planning to have it constructed and hooked up at the same time in April?

I am so glad that you are now on the road to health.

My son Dillon had his surgery in three parts. For his first surgery he was very ill and thus only had his colon removed and then was given time to get healthy and off all the drugs. We were told that the surgeon would not know if the building of the J pouch and closing the ileostomy site could be done in one surgery until they were inside and could see the health of the tissue. We were also told that if "things" did not go 100% by protocol that the rules at our hospital were that a loop ileostomy would be needed for at least 8-12 weeks to allow the pouch to completely heal before having the take down. Unfortunately, even though the surgeon said that Dillon's tissues looked really good, there was a complication during surgery and he had a loop ileostomy for 8 weeks.

Recovery from the second surgery was still difficult since this was, as well, very major surgery. They did not do it laproscopically but the incision was much smaller than from the first surgery. The big difference was that going into this surgery he was healthy and that did make for a much quicker recovery (all though not a walk in the park). Recovery from the third surgery was walk in the park since all they did was close the ileostomy site. However, it did take a while to get used to the new plumbing.

Dillon is now a year post his take down and he is doing SO well. He pretty much as forgotten what UC life was like!

Again, it is great news that step one is behind you and soon you will be feeling SO MUCH BETTER!