New G-J Tube

Went in to get my tube replaced today. The first reaction the prep people had once they got me on the table was surprise at the age of my old tube. Seems they haven't made them like that for quite some time. When I told them I'd had it for over two years, I was told that normal practice is to replace them every eight months. Who knew? Consequently, as they were inserting the new one, I was informed that they would book me an appointment in eight months for the next one. The good news is the procedure is only mildly uncomfortable and it didn't even require the local anesthetic which they used for the original. And no nasal tube either.

The new tube is different in that there's no shut off valve on this one which means that, when flushing, I'll have to be quick getting the syringe on or it could get a wee bit messy. Shouldn't be a problem.

No TPN - Yet

On May 24 I wrote that I would be calling my GI doctor about my recent weight loss and my inability to get a full feed into me. Well, I did call and I saw him twice in the next week. As a result of my visits I will be trying yet another formula, Vital HN. According to the dietician who works with the doctor, this should be easier for my body to absorb. the drawback is that this product comes in powder form so I will have to mix it up one cup at a time. It also has a hang life of only six hours which means no more overnight feeds. So it's a matter of convenience really but if it works it should be worth the extra effort.

It also means using a new type of bag and tube, they arrived Friday. And the Vital is now on backorder so I haven't received it yet and have been continuing to use the Peptamen 1.5 in the interim.

It's also worth mentioning that the doctor prescribed Ciproflaxacin, an antibiotic, to clean out my gut. This is to replace the erythromycin which we had used previously. I am happy to report that the cipro worked from day 1 - no more diarrhea and I am taking some food by mouth again because I actually feel hungry. It has also allowed me to venture out of the apartment more because I am no longer afraid of having an accident. Put all this together and I can say that I am enjoying life again. Yeehaw.

Oh, one more thing. In a couple of days I will be going in to have my G-J tube replaced. A couple of months ago it developed a small crack where the hardware joins the tube. I patched it, first with duct tape, and then with duo-derm, but it still leaks occasionally so I'll be happy to get that taken care of.

Walk a Huge Success

Dr. Janet Pope cutting the ribbon to begin the walk.

Well it's been almost a week since the walk and concert, the dust has settled and we just got our final tally today which stands at $13 163.49. Because this was the first walk we have organized, we really had no idea how it would go but, needless to say, this far exceeded any expectations we may have had. A great deal of the credit and a huge thank you goes out to our members, especially Angela Lavis and Stephanie Doyle and their families who came on board part way through the process. Their enthusiasm and energy made all the difference.

On a not so happy note, I just received word this evening that my brother, who also has scleroderma, died today. A timely and poignant reminder that we need a cure for this disease.