6 weeks post op

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….

Eating and supplements

A little over a year out now from losing my stomach eating seems to get easier with each month that passes.  There are still days that are rough but overall getting used to what I can and cannot tolerate.  I still sometimes struggle with how much I can eat.  It seems sometimes like I can eat any amount and the next day maybe two bites.  My tastes have also changed somewhat and it is disturbing to eat something and have it taste totally different than you expected.

From other stomach less friends that I have made and blogs and support groups that I follow, the one thing that is common among all of is that we are all different.  We had our stomachs removed for a variety of reasons and our surgeons, gastroenterologists, nutritionist all had us start off eating differently.  Many came home with feeding tubes, some have never gotten rid of them and some have never had one.

I did have a feeding tube while I was in the hospital at Mayo Clinic.  It become blocked while I was in the hospital and they were no longer able to use it.  I also developed an anastomotic leak which is a leak where they joined my esophagus to my small bowel.  At this point is when I started TPN, or IV nutrition that I have mentioned before.

Looking back now, I know that I left the hospital too soon.  I also know that it is because I pushed for that to happen every single day.  I was not honest with them or myself about the condition I was in….but I blame part of that on drugs.  I was on a lot and came home on a lot.  Staying at least one or even two more weeks would have probably been more beneficial for myself and my family.

I had to have a barium swallow study done before I was even allowed to have ice chips because as long as there was a leak it was very strict nothing by mouth.  I did pass the test, less than a week before I got to come home.  I started with liquids only, then soft foods and was sent home to progress as my body was able to tolerate.  The biggest “rule” was chew, chew and then chew some more as that is the only real breakdown that your food is going to get.  Also going slowly, which is much more difficult than you would think.

I was used to eating in a hurry to get this or that done.  We have always eaten as a family and I now have difficulty sitting with other people to eat because I quit paying attention to what I am doing.  If I swallow something that I have not chewed well enough it feels stuck in my chest.  I am either going to be in pain (severe) until it works its way down or my body is going to rebel and I will start heaving until I can force it back up.  Both of the options suck so I really do pay attention to what I am doing when I am eating.  It is amazing to me to watch other people eat now.  The speed at which others (previously myself) eat is just astonishing to me now and sometimes even repulsive.  Just a heads up to those who do and may eat with me in the future, I’m not judging you and if it seems like I am ignoring you it’s because I’m thinking about chewing….lol.

So a year later I can eat almost anything.  The key is eating frequently enough, chewing enough and not eating too much.  Things that I cannot tolerate are actually easier to list.

Sugar… I can eat very, very small amounts of sugar occasionally but this usually leads to dumping syndrome, severe hypoglycemia, racing heart and terrible nausea that can last for several hours.  It is not worth it, but times passes and I try again (like last night) and then I am quickly reminded how bad it is.

Another thing that I have difficulty with is milk.  I was a big milk drinker and I can tolerate some dairy products but plain milk is just about as bad as sugar.  Bread is very difficult unless it is toasted.   Large amounts of carbohydrates will almost always cause me to end up with dumping syndrome.

I am also a very picky eater and that makes things a little bit harder for me than most but I feel like I am finally getting a handle on it.  The best news is that for the most part I can manage and maintain my weight now.  The worst part is the vitamin and nutritional deficiencies that occur from malabsorption.

Without a stomach there is no time for food to sit and break down and absorb.  There are also a lot of things that are only absorbed in the stomach.  Fortunately, all of this is managed by my physicians and lab results and then prescribed what my body needs that I am not able to get.

Currently I take Vitamin D, I wear a multivitamin patch that I change every day, I give myself B12 injections every other week, I take potassium and magnesium.  I still run low normal on some of these but they will always be monitored closely.   Fortunately, I am learning to recognize what my “normal” feels like and recognize when something feels off.  I am also lucky to have a physician that will check if I am concerned.

I have learned more about nutrional needs this past year than I ever wanted to know.  I can remember the food pyramid and your daily servings, etc in health class in middle school.  I didn’t care about that and it was boring.  I still think it’s boring and although occasionally interesting still a very boring topic….at least for me.