Adapting to my G/J Tube: One Month Post Op

So I’ve officially had my G/J tube for a little over a month today (5/2/18). I’m still in pain and I’ve been dealing with a bit of granulation tissue. And for those that have no idea what I’m talking about granulation tissue is a type of tissue that forms at my tube site because my body is trying to heal my stoma (the hole where the tube goes into my abdomen). But because my tube is in the way my body can’t finish the healing process and it just builds up.

Granulation tissue circled in green

Granulation tissue is very blood rich, so if I were to tap it with a Q-tip while cleaning around my tube for dressing changes it will most likely bleed a bit. It can also get very painful and I have to change the way I move to avoid irritating it further.

I’ve already had it burned off with silver nitrate once; It hurt pretty bad, though I’ve never experienced silver nitrate before. It’s not something I really want to experience again, but my surgeon wasn’t thorough with getting all the tissue. I did call into my dermatologist’s office though, and she’s willing to take over periodically burning off the granulation. It’s way easier to see her, rather than making the long trek to my surgeon, who will probably just look at me like I’m an idiot. His bedside manner and everything really sucks, but no other surgeon will touch me.

In the end at least I don’t have to see him frequently, at this point I’ll now only see him for tube changes. I currently still have my dangly tube until my stoma becomes fully mature, that basically means when it’s fully “healed”. That will be at the end of the month and I could switch to my button feeding tube, but from the 1-7^th I’ll be on a family vacation in Florida and I don’t want to be stuck in bed the whole time, it would kill me. But I will be getting my button feeding tube placed when we get back from the trip though.

People tell me that feeding tube changes shouldn’t hurt but I have an extreme response to pain thanks to my Fibromyalgia, so I have no idea how my body will react. Not to mention I’ll also have to be inpatient for at least one day after what happened after my initial tube placement. Three days after I had my tube placed I developed a 101-degree fever and was screaming in pain. Though because of my EDS I metabolize pain medications differently, so keeping up with my pain management is a chore.

All in all I’m acclimating to my tube, but still dealing with some body image issues but I hope to work my way through them step by step, Rome wasn’t built in a day. I do feel stronger though; I’m more awake and alert in general throughout the day. I’m just doing what I can day by day.

 In general caring for my tube though has become second nature, as well as operating my pump. My tube care consists of changing my split gauze that goes around my tube to absorb any bile drainage, cleaning around my tube and making sure my tube is taped to my stomach correctly, but there are days when I let my tube just dangle freely.

My tube with and without a dressing

To keep my stoma healthy I clean around my tube and the edge of my stoma with a mixture of Witch Hazel, Tea Tree Oil and Lavender oil. All three of these components are good for your skin. Witch Hazel and Tea Tree Oil are both good for inflammation and killing any possible bacteria. Lavender is good for wound healing and itching in this case. I make two ounces of it at a time because that's the only container I could find. 

The mixture consists of 12-15 drops each of Lavender Oil and Tea Tree oil then you fill the rest of the container up with Witch Hazel. I got this recipe from one of my friends, it's supposed to be a toner for your face actually but I use it for both my stoma and face. And make sure you shake it up every time before you use it. And it's supposed to look a bit cloudy after you shake it.

I’ve also gotten a bit more confident with going out with my parents or at an appointment or really any basic environment that isn’t at home. Though the ultimate test of my confidence will be when we go through the airport to get to Florida and walking around in Florida in general. Because of my anxiety this will be a bit of a difficult task, but my main goal is to not have a breakdown and cry in the middle of the airport. I won’t say what we’re doing yet but trust me it’s going to be awesome, and probably worth any possible breakdowns I may have.

My feeding tube also doesn’t hurt as much as it has in the last week or so, which I’m okay with because I’ve been able to move a bit more freely. And I’ve been able to walk around a little more and go outside and sit with my cats. Really you don’t realize how much you use your abdominal muscles for virtually every little movement. I’ve been having to use my arm muscles a lot more, but that has it’s own benefits because I feel like my upper body strength has improved. The small improvements I’ve seen in my body do add up and I’m so happy things do appear to be headed in the right direction.

Also because it’s May that means it’s EDS Awareness Month!! I’m not sure what to do for it this year. Last year I did make a EDS AwarenessMonth Blog Challenge though if anyone wants to participate in that. There are a few things I’ve heard from people that I will touch on in the coming weeks that relate to EDS. I’m going to try to up my post schedule from one post a week to two posts a week. Next week will also be the first week of me doing a project of sorts with some people from a app called Health Storylines. And there will also be a product review or two going up this month.