When to Much is just to Much!

The last few weeks have been hell! Physically, mentally just exhausted in general!

Stress is such a trigger for my belly issues and the last couple of weeks have been nothing but stress and I’m beginning to feel it.  I have a terrible headache, my stomach hurts, i need to poo.  Family issues that do not have a good resolution, husband work issues that is stressing him out, planning a vacation that might not be able to happen and now my body is revolting!  My new drain for my G Tube is moving and causing me issues with pain to op everything off!  Don’t get me wrong I am so grateful for the G Tube, I am able to vent and drain my stomach and it has helped so very much but with one good thing comes another bad thing.  I know I need to take it easy but stuff still needs done, but I’m still a wife and mother and friend so I push myself, push myself to do what needs done.  One day I will learn, I hope.  But this week has not been the week to learn that lesson.  I take my medicine and do what I need to do medically but sometimes enough is enough.

Maybe the next few days will be better, I am hoping!  So here’s to good tummy days!

Let Me Tell You About My Day

So I make it a point to not bail on events that I have committed to, my niece’s baby shower was today so I made arrangements with my daughter to drive 45 minutes ut of her wa to come get me, I love my kid! Of course I woke u with so much nausea! I have recently started using a drain bag at night to help with the morning nausea, it’s been such a blessing!  So after hours of getting ready, I have to rest after showers and standing to long and then it takes forever to pack everything I need to take with me, I was ready to go, or so I thought.  Even after all my meds I was still pretty nauseous so I thought the drain bag is doing so well I can rig something up to let my GTube drain while at the house.  So after a little creative engineering I got a storage bag and an extension kit nd tape, I’m on my way!  I went ahead and left the bag hooked up for the 45 minute drive to the party.  I take one step out of the car and I did not realize how much had actually drained, pop bam and there goes the drain bag straight down my leg all over my boots and the bag ruptured.  Holy sweet Jesus was I a mess, but at least I was out of the car so all this happened outside.  After a few carefully chosen words I started to clean everything up.  I smelled of stomach bile, looked like I peed down my leg and still nauseous.  All I could do was laugh, laugh at myself for looking so silly standing in a parking lot of a nice hotel with yellow slime all over me and the parking lot.  Lesson learned:  hold on to your drain bag when standing up!  I was able to go to the bathroom and clean myself up but I still smelled of vomit, thank goodness there were three babies at the party so I just smelled like the rest of the moms.  The baby shower was a success and I made it home in one piece but dang I smelled so bad my dogs walked away from me!  Made it to the shower and got cleaned up but I think the images from today will make me rethink my engineering abilities and maybe pack a change of clothes from now on.  LOL at this rate I better start packing me an adult diaper bag!  Live and Learn

Lets Talk Medications

Since July of 2016 I have been on so many different medications that I could start my own pharmacy.  This one works, that one doesn’t, this might but the side effects are such and such, it’s completely exhausting! Back in July I was taking 15 pills a day, not a great experience when you throw them back up but at least I tried.  Once I was able to find a doctor that would listen to me things started going better, I went down to only 10 pills a day, Yah Me! Well after 2 surgeries and a feeding tube I am back up to 21 pills a day.  It’s no wonder I am never hungry I take so much medicine whats left of my stomach is full of pills.  I take this one 3 times a day and that one 4 times and I have this one in case that one doesn’t work.  It’s so frustrating that I have an app on my phone that reminds me what I need to take and when, I also have a handy-dandy watch now that also reminds me to take my meds.  Don’t get me wrong I love the app (CareZone) as it helps me track pretty much everything about my condition.  It even let me link my husband so if something happens he is able to tell the doctors exactly what is going on my meds, my vitals, what and how much I extract from my GTube, etc.  What I did not realize is that my husband also gets notifications of all of this.  He had joked that after I got out of the hospital he was going to put nanny cams everywhere so he could keep an eye on me when he’s at work, apparently this is the next best thing!  So now not only does my phone yell at me, my watch does and now my husband “Hey babe did you take your meds, it’s not showing up on your list”.  Oh and lets not forget my feeding tube pump yelling at me that it’s on hold or that there is an air bubble in the line or my bags of water or formula are low.  I have actually stopped and just screamed I AM DOING THE BEST I CAN GET OFF MY BACK! I know it sounds funny that I am yelling at objects that are trying to help me feel better but sometimes it just gets to be too much!  What I have come to learn during the past few weeks is that some medications you can’t take with others or that some you have to eat something with it or you get sick or that one of my medications gives you the “munchies”.  These things you learn as you go by trial and error.  Something not working well google it! I have a love/hate relationship with Google these days.  How long can the formula last in my tube feeds before it goes bad?  Do I need to keep it cold when I go out for the day and have to pack it around in the cute little backpack I made cause the one that came with it was so ugly!  I think the people who deal with this stuff on a daily basis assume we know all about when and how to take the medications or how to care for your feeding tube system but we don’t and it is usually the worst possible time to realize that I know nothing about what is going into my body.  I have a great pharmacy team but I am pretty sure they are tired of answering my questions too.  I am tired of taking so many pills and I am tired of being hooked up to a machine that pumps formula into my intestines so I can stay alive but at the same time I am glad that I have access to these medications and a system that can give me nutrients to keep my body functioning.  I know I am racking up the prescription points at my pharmacy and soon I should be able to go on a wild shopping spree and get new tape or gauze or whatever my med bag is running low on with the rewards.  And getting ready to leave the house or the day is a major feat, I have my med bag, my emergency tube bag, extra water and formula in one backpack and my feeding system in another backpack and then my purse that I am slowly learning that I can live without.  On top of all that I must have something to drink with me all the time because the meds dry out my mouth so bad that I feel like I’ve walked miles through the desert.  So if you see a short woman walking around and she looks like she is trying to run away from home just give me a shout out, I’m sure I can’t be missed!

My journey to now

I have always had tummy troubles, even as a child I was told I had a nervous stomach.  As a teenager i had bulimia, which I’m sure was easier for me than most because I was already so used to throwing up it seemed natural to me.  Fast forward I was married to a man who for 20 years was both physically and emotionally abusing, it did not help my nervous stomach to constantly be in fear.  In 2011 I was taken to the emergency room and was diagnosed with bleeding ulcers and spent 3 days in the hospital.  I was later informed that I needed an emergency blood transfusion, my ex husband had refused to let them do one in the hospital apparently.  I found out I needed this procedure one day because a nurse called me and told me I needed to come in right away and explained to me what had happened.  Needless to say I was more than a little upset but I secretly went to the hospital and received the transfusion without my ex husbands knowledge.  Upon release the only instructions I was given was to take over the counter (OTC) Prilosec.  So I did for the next 5 years.  In the summer of 2016 I began experiencing horrid pain in my stomach and I was vomiting all the time.  After much prodding from my husband and children I made a doctor’s appointment.  They did every blood test known to man I think with all the blood they took and i had numerous other tests.  At this point the doctor refered me to a GI doctor for an EGD (Upper endoscopy, also known as EGD, is a procedure in which a thin scope with a light and camera at its tip is used to look inside the upper digestive tract — the esophagus, stomach, and first part of the small intestine, called the duodenum.) This is when I found out that I had so much scar tissue in my stomach from years of ulcers that it was creating an obstruction between my stomach and my small intestines.  OK, finally some answers.  Well the primary doctor handed me off to the GI doctor who handed me off to the primary doctor and it became a vicious cycle.  So I fired both and went on the hunt for a new doctor!  I was luck enough that I found a family doctor that was part of a much larger organization with many doctors that specialize in a wide variety of illnesses.  Once the new doctor looked at my records, yes I took everything I had, test results, ct reports and pictures from my EGD, he immediately referred me to one of the GI doctors.  Great I thought let’s get this moving.  It took 2 months to get an appointment with the GI doctor but at least the primary was able to give me medications to help in the mean time.  I received a call from the GI office and was told that before I see the doctor he wanted to redo the EGD, great!  So I go to the office and they put me out for the procedure, once I wake up I was told that I have a complete obstruction and he is sending me to a surgeon right away, that was on a Thursday.  By Tuesday morning we were sitting in the surgeons office going over what was going to be happening.  The first thing the surgeon said to me is we do not do this surgery anymore, modern medicine 9 times out of 10 take care of the issue but nope not me, I gotta “kick it old school” honest to goodness quote from the surgeon.  So 2 weeks later I’m in the hospital for a partial gastrectomy, simple terms they were removing part of my stomach and small intestines and reconnecting them to remove the obstruction.  The goal was to eliminate the obstruction and things should go back to normal, well that was the goal anyway.  After a two week stay in the hospital I was release but still had my site drain because there was still a lot of stuff coming from my wound site.  As the days went by nothing improved.  Frustrated and unsure what was going on we had another EGD done, and that’s when it became clear what was going on in my system.  My stomach had forgotten how to work, like at all.  I had food in my stomach that was a week old, not the words we were hoping for.  After numerous tests if was determined that I had Gastroparesis (A condition that affects the stomach muscles and prevents proper stomach emptying.) Ok more answers that’s good right, now we know now we can treat it. We tried medicine after medicine and nothing worked and the vomiting was back.  It was decided that I need tube feedings because I was not getting the nutrients I needed to heal properly.  Sweet, let’s get this party started and I will get to feeling human again.  So we go to the hospital for the procedure, first the radiology department tried placing the tube, nope we cant do it there is not a clear path for the tubing.  Ok so the GI doctor comes in and tries, nope not enough space to not damage other organs, damn!  So back to the surgeon who we had discussed with earlier the what ifs if the non surgical placement would not work, back to surgery.  This time to reroute the plumbing and place the feeding tube.  So basically i have a big loop in my small intestines that wraps around and then is reconnected to the bottom part of my stomach, the idea being the food will bypass the stomach and go right into the intestines, not an ideal option but it’s what needed done.  So I spent 19 days in the hospital this time.  They could not get the feedings right for me to tolerate so we had to find the right combo for me.  3 different formulas later hurray I think we found one.  I was still not able to tolerate the amount they wanted but I could work on that at home.  First couple of weeks home we ok, not great but ok then things started to take a turn for the worse again, the vomiting, the heartburn and the most awful belching I had ever experienced and it tasted like the nasty formula.  Great my body has developed a sensitivity to the formula.  Here we go changing the formula again.  This time though its been better, no more belching or burping the formula taste.  So here we are still trudging along trying to figure out how to make this new life work.  It’s a journey, its my journey!