Tomorrow is 6 weeks post op…it seems like that should be a magical day of recovery where everything is all better….right?!?!?! That would be amazing, as well as miraculous. I am feeling very impatient at this point.
Impatient with the healing process, impatient with the eating process, impatient with my life in general. I feel like once I get even close to some type of “new normal” I am slapped in the face with yet another medical issue, another surgery, another bill, etc…I feel like I usually have a pretty good handle on all of this as well as a fairly good attitude but I have to admit that I have really been struggling these last six weeks.
Maybe it is the holidays??? This is my favorite time of the year with the kids and family all around. I think that with the feeding tube and not eating has just furthered the sad truth that everything is based around food sadly. Every get together is about who is going to bring what and then there is all the sweets and treats…even not around the holidays is the “want to go to dinner?”, “meet for lunch?”,”we’re having a bbq”, etc. I don’t know it is just more isolating than ever before.
I have been feeling sorry for myself and I know that is normal but it something that I can’t stand and such a complete waste of time and energy. I think it goes along with the isolation feeling as well. Once you have been chronically ill, especially for almost 14 years now, it seems somewhat normal to everyone else. It is not at all normal, for me or for anyone around me.
Enough whining…on a positive note I am healing fairly well at this point. My incision looks fabulous. I still have pain all over my abdomen and lower chest that comes and goes but that is normal at this point. My J tube is just gross…there is no way to glamorize it. The stoma (Gross word in itself) where the tube goes inside me constantly drains. It is disgusting and it is a constant battle changing the dressing to keep it from being on my skin to long and causing irritation and granulation tissue, as well as leaking on my clothes.
Feeding…I am doing great with the feeding itself as well as administering medications through the tube. Introducing liquids and soft foods has not been as successful. I talked with the nutrition specialist from Mayo and my surgical team today and this is not uncommon. Like everything it seems, a couple steps forward and another one back. I am ok with liquid all the time, there is just not a ton of calories in the amounts that I am able to consume so I still need complete tube feeding with liquids. Soft foods have caused a lot of nausea, pain and bowel issues. We decided to back off the soft food some and instead of trying to initiate soft foods as quickly we are basically going to go at the pace that my body wants to. This is great because it alleviates my discomfort from eating but I really want to get this tube out.
It is really a struggle between the easy way of tube feeding and the pain of dealing with the j tube and the pain and effort of trying to eat enough, often enough to get enough calories to maintain my weight.
I hope everyone that takes the time to read this has a very Merry Christmas and a blessed holiday season! Thank you for following my journey to this point….