I’ve been fighting a bit with granulation tissue since my infection cleared up. The granulation tissue has been draining something nasty, bleeds a bit but surprisingly doesn’t hurt. It is growing more inside than outside which has made it difficult to treat. My doctor has taken silver nitrate sticks to burn off, or cauterize, the growing tissue. It is a painless procedure but does cause soreness a few hours later. The tissue will die and form a scab that will later just fall off.

The unusually high drainage from the granulation tissue keeps the wound moist. Perhaps that is the reason it has been continually infected. This will be something I’ll need to watch.

UPDATE (8/26/10)

We had great success with keeping the granulation tissue from advancing further in my system. In fact, the Nitrate Sticks worked so well (and painlessly), I have yet to find any remaining granulation tissue. It isn’t a cure, and will most likely come back despite my best efforts, but for now – the pain, swelling and drainage has stopped and I haven’t had an infection since =)

I post pictures here only so those who think they may have one, have some sort of idea of what one might look like. In any case, my stoma has now become infected, once again. It happens so frequently that I don’t even need to go in for an appointment anymore. I just call my doctor or surgeon and they call in a prescription. It doesn’t bother me so much anymore other than the fact I’m rather drained of energy. I’m OK in the morning and early afternoon but come 4 or 5pm, I sort of hit a wall and start feeling ill and tired (and grumpy). So I try to get everything done before the early afternoon and it all seems to work out OK. The button is still wonderful and all the work that my doctors and I put in to get one for me, is still completely worth it. I LOVE it and recommend anyone with a tube to get one, if possible.

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 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!