Feeding Tube and Weight Update

I have another follow up with Dr. Frech to check my weight and to see how things have progressed with the small intestine bacterial overgrowth. I weigh 132 at this appointment; still 8 pounds shy of my target weight. However, we both agree that the tube may be the culprit of all my pain issues. Dr. Frech still feels that taking out the feeding tube at this point is premature and does not feel like it would be in my best interest to do this. Mainly because he is worried that I won’t be able to maintain my weight and the tube will have to be put back in. But because of all of the pain issues I am having, he decides that we can stop doing the tube feeds and try to maintain my calories and current weight for one month. If I can do this, he will give his ok to take out the tube and then hopefully this will resolve the pain issues. There are a couple things that we are going to have to do trial and error as well.

The first being that since I semi-responded to the antibiotic for the SIBO, he wants to try a longer dose and see if I just need more time on the antibiotic. If I don’t completely respond to the 14 day dose I will have to have another colonoscopy. The reason for this being that since I had white blood cells come back positive in the stool test and I haven’t completely responded to the antibiotics, it could be colitis. So hopefully the 14 day dose will work and I won’t have to have another colonoscopy (cause these are always so much fun).

The second thing we are going to try is the FODmap diet. Dr. Frech thinks that this will help me out and allow me to eat more. Not sure why. I basically follow this diet anyways with all the restrictions I currently have. So I have to just chop out a few more things and then I will officially be on this diet.

I also have some granulomas forming around the tube. This is my body just trying to heal around the tube but the tube won’t allow the skin to come together so the skin starts folding over on itself. He decides that he is going to cauterize the skin by using silver nitrate. This should also help cut down on the drainage from around the tube. I didn’t think much about him doing this. Little did I know how painful this would be. I couldn’t sit for the next 2 days. I either had to be standing or lying down. Sitting down put too much pressure on my abdomen and the area that was cauterized. It caused a horrible burning and pinching sensation. Needless to say, I will never let someone use silver nitrate on my abdomen again!!

So now the plan is to follow the FODmap diet. Continue the antibiotics for 14 days to hopefully cure the SIBO. Continue to focus on eating and maintaining my weight. If I can do all this, then I can have the feeding tube taken out in a month. I see Dr. Rasmussen for his follow up part this week. Whew.