After many months of waiting and some surgical complications, I was fitted with my Mic-key balloon button on the 27th of July. I could not be happier with it. Since my surgical tube was placed so far down my intestine, it was no longer accessible via endoscopy, and had to be changed, placed and measured through Interventional Radiology. I found out a gastrostomy button cannot be used in place of a jejunostomy. Because the intestines lack holding chambers for food, a long tube with ports or holes must still be used to deliver nutrition via pump.  A gastrostomy button has no such tube, so formula fed through it would simply build up beneath the tube site.

So the process of getting a jejunostomy button involves 2 parts. First, you must be measured for your button. Depth and width of your stoma is measured to make sure you receive a properly fitting button. To measure, your old tube is taken out. This part excited me because a new shiny tube was put in its place.

This is the first time I had an internal bolster that was a balloon. The other two tubes were either held in place with stitches (sucky) or by a piece of plastic. I prefer the non-balloon tubes because there is less movement and I feel they are slightly more secure when you have a 45 pound puppy pulling at it. But after my last attempt at a button, they would not allow anything but a balloon tube/button to be used.

After I was measured for my button and the new tube placed (I was heavily sedated for both of these processes), an order was placed for a new button that would fit. A week later I was back in Interventional Radiology getting fitted by Dr. Justin Siegal for my long-awaited button (heavily sedated again). The end part is the only section that is outside the body with the rest inside.

Totally still drugged up but, I love this guy!

Walking around shortly after being awoken from sedation.

Showing Dr. Patterson my new button!

Still blue from that antiseptic stuff and a bit swollen but it is still pretty!

Final product! After all the work, complications and appointments – I have my button =)

It took approximately 1 hour for the procedure with another hour of recovery. There was very little pain experienced and anything I did experience I attribute to the fact that it was the first time I had a balloon in my intestine. If anyone is considering switching from a tube to a low-profile button, I 100% recommend it. The freedom you get with the button is amazing and it is just plain more attractive. Thanks to all who have put up with me, in my quest for a jejunostomy low-profile button. It is very much appreciated =)

I just got back from my post-op/consultation appointment with the surgeon who did my emergency exploratory laparatomy. She is wonderful. Didn’t get to talk to her much when I was in the hospital but she is just about the nicest surgeon I’ve ever met! I added her to the list of doctors, if anyone is looking for a caring, warm and sincere general surgeon, Dr. Lily Chang.

I found out my surgery lasted 2 hours. I was told that it is rare to survive the type of surgery I had. Perforation of the bowel is pretty serious along with the peritonitis I developed in the few moments between procedures. They were extremely relieved and happy with my recovery so far and how quickly I turned around. I’m not completely free of complications but, she said the bulk of my recovery is over.

I questioned her about switching out tubes for new tubes or buttons. She told me that a tube switch would be ok to do in the next few weeks as long as it is to the same size or a size smaller, tube. It’d be done endoscopically like my last one, by the same GI surgeon. I asked if that would push back the recovery time needed for a button placement and she said it would not. So the following month I can get my button. It was all very good news. I was afraid I’d have to keep this ugly, stupid, useless tube for the rest of my tube feeding time. Not so!

I’m going in to talk to my GI about what my surgeon said, and to see if I could possibly schedule the procedure for a tube switch for next month. Just so I have something to work towards and so I don’t end up doing it last minute. Hopefully it all goes as well there as it did with my surgeon.

Medicine is a science of uncertainty and an art of probability. — William Osler

I apologize for not updating here, as I should, but for once I have an excuse other than pure laziness. As I mentioned briefly in the tubes section of experiences, I was approved and waiting for the outpatient procedure that would change my PEJ tube to a PEJ button. Through this procedure, I’d have a bit more freedom and experience less infections, rancid aromas and also be down one puppy chew toy. I patiently, um – as patiently as Kirby can be, waited the 2 months after original PEJ placement so that I may have my button. The button represented so many things such as the freedom previously mentioned, return to a new state of normalcy, and even a bit of beauty (no tube hanging from the body could be considered its own form of beauty).

When I got the greenlight for a button procedure, I pushed and pushed to get the procedure scheduled for the day before yesterday. I saw my doctor on Thursday (6/3/10) and was able to get an appointment for 9am the morning of June 8th. I couldn’t be more excited to finally have a date. Something solid I could work with and towards. I went out and did my hospital pajama outfit shopping routine and my OCD housecleaning. I knew I would only be gone for a day with a slight possibility of an overnight stay, but, it kept me busy – and you just never know what could happen. Well the unknown quickly became the known on the morning of the 8th in June.

I left for the hospital for a button procedure with the aid of endoscopy, at 7:45am. I was prepped and ready to go with sedatives administered at 9:30am. Even though I came in with a migraine that I had been fighting for the past few days – I knocked right out. I woke up to my husband and doctors I didn’t know. After 10 previous endoscopies, I knew this was not normal. Usually the anesthesia wears off before I see anyone and if I see any doctors, it is going to be my gastroenterologist who preforms the procedure. Confused and still groggy I was told by my husband that they were going to be rushing me in for another surgery. There were complications and the doctors were arguing back and forth about whether there would be time for ct scans and x-rays as well as pain medications like epidurals and injections (yes, it was that bad). No time for anything – into the OR I went for complications that still didn’t get explained to me. There just wasn’t time for me to fully wake up to comprehend it all.

I don’t know how long the second procedure was but I did make it out safely and with my whole intestine in tact.
[flickr-gallery mode=”tag” tags=”emergency”]

How did this all happen? What was the process? Well, to remove the original tube – they had to go through my gut endoscopically and cut off the internal bumper. Then the tube is free to be pulled out from the outside. While the first tube healed, it created almost like a vessel – a connection of tissue, if you will, between the abdominal wall and the intestine. This kept the intestine close to the wall and stable. When the first tube was removed and the new button put in, refer to this picture of the button tube, the force from pushing it through caused that tissue to break and for the intestine to pull away from the abdominal wall. This is what they meant when they kept telling me, “we lost your small intestine.”

Once the intestine was lost from view – with the hole still very much open, everything from my intestine was leaking out into my abdominal cavity quickly filling it to the point of near organ failure, with fluid, air and other types of matter. Because of the rate at which it was leaking, there was no time for CT scans, X-Rays or even an epidural, all of which the doctors were fighting to get. I was lucky not to lose my intestine during the process. During the short moments between one procedure and the next, I developed peritonitis. Another major complication to throw onto the pile. Sometime during the procedure an issue came up regarding my pacemaker. Should it stay on or off during the surgery? Cauterizers are on the no-no list of things to hang around with while having a gastric neurostimulator implanted. The doctors, again, felt there was no time to turn it off and continued with the surgery. Of course, the worst situation did happen and they cauterized right through one of the leads in my stomach. Improvising, they used some sort of electrical gel to maintain the connection and my wonderful gastroenterologist, who insisted on sitting in on the surgery, made sure it was in full working order.

I don’t know how long I was in the OR for or how long it took for me to leave the recovery room but I do know that I was back into a hospital room by 6pm. It was a very long and complicated day. I scared a lot of friends and family. I stayed in the hospital for 5 days. My stomach went from one extreme to the other:

But overall, I’m doing OK. Slowly recovering and hoping to soon replace this ugly surgical tube (with no bumpers, clamp or decent plug – held in place with stitches!) with my old tube while I start the waiting game for another chance at a button. C’mon Dr. Patterson – you can do it, I know you can!