I have an appointment on Wednesday to get measured for a new button and if they have the one I need in stock, they will place it. I will most likely be sedated and stay overnight due to the events of my last procedure. This will all be done via Interventional Radiology. I am hoping for the best as this current tube is continually infected and smelly. I am greatly anticipating my new button and while excited, I’m still hesitant and a bit scared because of what happened last time. I’m sure that everything will go great and that the last time was that 1% of patients with complications.

It has been warm here the past few weeks and I have noticed an increase in GP symptoms. I have read the stories of others and they too, notice changes in their symptoms when the weather gets hot. I’m not sure why this is, but I’m not a fan. I’ve noticed more nausea, fatigue and pain. I’ve been tube feeding more than normal because of all that and am thankful everyday I have that option. I look forward to the fall and winter when the heat settles down and allergies are under control.

I haven’t updated much here because not much has changed. I’m still recovering, slowly, from the surgery I had. I still have the tube they put in during surgery, the one held in place by stitches. I am not a fan of this tube. It has no clamp, it is very flimsy, it didn’t have a port until I put one in, and of course, it is very unattractive! It has recently gotten infected and I am back on antibiotics.

At least my incision scar is healing up nicely as well as my old tube site. As you can see, the surgically placed tube is much higher up on my abdomen however where it is actually placed in my intestine is lower. So low, in fact, that it isn’t accessible via endoscopy. Any changes to my tube will require surgery or interventional radiology. My tube size also changed to what I think is 18FR even though some of the records say it is 16FR. I hope it is 18FR otherwise getting a button fitted will be more of a challenge.

My doctors are still planning a button change at the end of this month. I’m quite excited for it. I haven’t met anyone who regrets getting a button over having a long tube. So much more convenient and when not hooked up – attractive!

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!

I really had to push myself yesterday and make myself climb. My husband and I used to boulder and outdoor sport climb all the time, before I got sick. In fact, it was I who got him into it at all. I started outdoor climbing way back in 2002 and have loved it ever since. But with this infection, I’m just so stinking tired all the time that I really don’t have any motivation to get up at all. I finally decided to push myself out the door to climb and it actually went fairly well.

I was able to bust through all the V1s without any problem whatsoever. I think next time I will attempt harder routes to see where my limit is. Yes, that is me with my feeding backpack on. I use a Zevex Infinity and I LOVE it. It works in any position with the bag above, below or under the pump (so long as there is no air in the feeding bag). The bag and pump have allowed me to act as a completely normal person; going out to movies, exercising, on vacations, whatever I want. Only thing that stops me now are these darn infections and the massive fatigue that seems to accompany them. I’ve almost finished my second round of antibiotics, so I guess we’ll see what happens with it.