Post-OP

Well my post-op visit at Cleveland Clinic went great. The ET nurse taught me how to do the intubating thing and I did it twice with her there. Its kinda nerve-wracking to try and stick that tube in but she said I was doing a great job. Both my doctors were very pleased with how well I'm doing and said I don't have to go back for 6 months!!! I can hardly believe it, but of course I'm thrilled. So I'll be going back in December to see both my surgeon and my GI and I'll also be having a scope of my new k-pouch. Because I have crohns disease it is important to monitor the pouch to see if there are any ulcers forming. I will continue on 6mp (my immunosuppressive) at least until December. If my pouch is clean there is the possibility that they will discontinue that drug as well. I'm over the moon!!

So far, the intubating thing is going OK. I'm on a schedule of intubating every 2-3 hours for one week, then 3-4 hours for two weeks then 4-5 hours for one week. After that I'll probably only need to intubate every 5 hours. Most people with a k-pouch only intubate 4 times a day and I'm totally excited about that prospect. I've got a solid month of hard work in front of me trying to "grow" my pouch. I have to intubate at night too which makes sleeping kinda difficult and I'm a little grumpy....

Intubating is really kinda weird. My catheter is clear and has a diameter smaller than a pea. One end is open and the other end is "bullet nosed" with two holes along the sides. That's the end that I stick into my stoma and stuff comes out the open end. Putting the tube in can be a little tricky though. There is a valve which goes through the muscle wall of the abdomen and ends in a stoma. The valve shuts to prevent any kind of gas or stool from coming out so I am continent. So in putting the tube in I have to apply slight pressure and just kinda wait. I have to make sure my stomach muscles are relaxed or there's no way the tube will go in, take deep and slow breaths and slowly turn the catheter keeping the slight pressure until POP I feel the cath slide past the valve and into the pouch. Then I still have to work against the muscles and the intestine to get the tube in because it will naturally push the tubing out. Once the tube is in stuff starts to flow out.

Sometimes I sit on the toilet and point the cath into the bowl and sometimes I stand and point it into a little container used especially for this. If the stool is thick and won't flow through the cath then I have to squirt some water into me to thin it out. I have to use a water-soluble lubricant to help the cath go in. My ET nurse said lots of people just buy KY because its readily available and works great. Since I intubate several times a day I guess I'll have to buy it in bulk - imagine the check-out person's face!

I will have to keep a cath, lubricant and bulb syringe on me at all times so I can intubate if I need to. When my pouch gets full I get a sensation of fullness, only lower down than my stomach. Also, my k-pouch seems to rest on my bladder so that causes a little discomfort sometimes, but I can live with it. When I'm done intubating I just cover my stoma with a little patch and off I go! No bag, no tube no nothing - I'm FREE. I'm very very excited and ready for life to normalize.

This is my new stoma, his name is Feza and I'm very happy to have him! You can see my midline incision is healing well (it's 7 1/2 inches long) and that spot on my left side is where I had an abdominal drain after surgery, it's almost healed too. Tragically, my belly button was demolished in this surgery but I guess it's a small price to pay. I'm really happy with how well everything is going, and ready to get on with my life!

I have a tube in my belly

I do. I've had it in for almost 4 weeks now and I'm getting sick of it.
True, I knew I would have it, but I did think it was just going to be for 4 weeks, instead its going to be 5 1/2. A week and a half more may not seem like a long time to you, but believe me, when you have a tube sticking out of your belly every day you're very aware of it.

The tubing connects to a bag which collects my waste. It is NOT like a regular ileostomy. With an ileostomy the bag is attached to your side. This bag is at the end of a 3 foot tube and I drag it around the house with me. When I want to go on an outing I attach the catheter to a little leg bag that I can strap around my leg. The reason I have all this is so that my internal pouch (my new kock pouch) can heal from surgery before we ask it to grow and hold waste on a regular basis.


In two weeks I am going back up to Cleveland for my post-op visit with my surgeon. I'm very excited for this visit #1 because they will remove the constant drain and teach me how to intubate on my own. No more dragging a bag around. I will cover my stoma with a little patch and only put the tube in every few hours when I need to empty. Piece of cake! #2 Reason for being excited is I have reason to believe that after this visit I may have one more check up in a couple of months (maybe) but after that will probably only have yearly visits with my surgeon!

I love my surgeon, he's wonderful. Couldn't have a better surgeon, BUT, I'm ready to be done with my monthly visits to the Cleveland Clinic. Once this is over I can move on with my life! That's totally exciting for me. No more wondering what step to take next, what medications I'll be on and for how long, what my next exam will show, what the surgeon says can be done. After all this time it'll be just a yearly scoping of my pouch "Hey that pouch looks great - see you next year!" Could life be that good again??